Tag Archives: 100 stories

It took me 30 years to make myself heard – World Voice Day

For World Voice Day we’re reposting this guest blog by Mandy, from Hereford. For the first 30 years of Mandy’s life, staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, they helped her get a communication device and Mandy was finally able make her voice heard. 

I was born in Warwickshire in 1965. I have cerebral palsy and use a motorised wheelchair, as well as 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.

Mandy at home, with photos of friends and family on the wall behind her
Mandy at home, with photos of friends and family on the wall behind her

Decisions made for me

I went to boarding school and then to a residential college in Devon. This would not have been my first choice, but the decision was made by the teachers from the school. I would much rather have lived closer to my family, but I was not given this option.

Then I moved into a residential home in Essex, 150 miles from home. It was a big home with 30 people in it, and only five support workers.

I used to get very angry and frustrated, because no one ever asked me what I wanted.

The staff and other professionals did not realise how much I understood, so they did not spend any time with me and I was often not allowed to make my own decisions.

It left me wondering – why? I could see other people making their own decisions. Yet I could not, just because people didn’t take the time to get to know me and understand my needs and wishes.

Finally getting a voice

In the late 1980s I moved to Hereford to live in a shared house run by Scope. I had my own room, but shared the house with a number of other people whom I had not chosen to live with.

A support worker noticed how much I understood, and helped me get a communication device. I mastered its use quite quickly, and could communicate properly for what felt like the first time.

This is where I began to feel a turning point in my life. Imagine what it was like – having a voice after all those years.

I contacted social workers, and with the help of my family and key worker, I started to make my case for living in my own home.

I had to work very hard at making people realise that it would be possible – that I would be able to cope with a more independent lifestyle where I could be in charge of my own life.

Mandy in her garden in Hereford
Mandy in her garden in Hereford

My own home

I got involved with Hereford Services for Independent Living (SIL). With their help and that of my social worker, Maggie, I claimed the allowances I needed to help pay for rent and 24-hour care.

I was very fortunate to get a fully accessible bungalow, and in August 2001, I moved into my own home. Now I really began to feel my confidence grow, and I gained more strength to make my own decisions and speak out. I built up a team of personal assistants by advertising, recruiting and interviewing. SIL supports me to arrange my finances as an employer and helps me sort out relief cover.

My support workers work a 24-hour shift, sleeping in my spare room overnight. This means I can organise my day however I choose without having to work around shift changeovers.

I recently completed a college course, and have also taken a creative writing class and written poetry. I have an active social life and often visit friends.

At this stage of my life, I feel more confident, decisive and stronger than I ever have before.

“I’m running the world’s only wheelchair spin class”

Guest post from Kris Saunders-Stowe, a fitness instructor working with both disabled and non-disabled people. In Scope’s film, he explains why we need to change the way we think about disability and fitness.

We hope it will inspire you to sign up to our inclusive fundraising event, Steptember and get moving this September!

DSC_0184My first response to the idea of using a wheelchair started with ‘f’ and ended with ‘off’! I was an active person, and never saw myself as a wheelchair user.

But my joint problems, which started 14 years ago, progressively got worse and I was doing less and less. Over time – and no word of a lie – I became a hermit. Going out became more and more difficult, and eventually I just thought, ‘What’s the point of going anywhere?’ I never went out apart from to the doctor and the supermarket.

‘It was so liberating’

Then some friends of mine were going to Alton Towers, and the only way I could realistically join them was by borrowing a wheelchair.

And that was it. It was so liberating. Suddenly I was back to normal. It was a completely different perspective – I was free to move about as quickly or slowly as I wanted, and I could do so much more.

That was two years ago, and I’ve never looked back since. My personality has come back, and I take things in my stride rather than letting them get on top of me. In actual fact, I think I’ve got a better life than I’ve had in probably 20 years.

Getting into fitness

I’ve always worked in horticulture and retail – never in sports or fitness at all. But then in 2012, I was in Cardiff and the Australian Paralympic team were staying in my hotel! We got chatting, and I followed the team during the Games and got quite engrossed.

DSC_0518I took up wheelchair basketball and we didn’t have a proper coach, so I had a go at standing in myself. I loved it, and I started thinking: ‘Could I do this for a job?’

Within a couple of months, I had started the qualifications I needed to become a fitness instructor.

While I was training, I realised that there aren’t enough fitness programmes properly tailored for disabled people. The few classes I could find on YouTube were extremely slow and sedentary. The instructor training manuals would say, ‘You may need to adapt this routine for disabled people…’ – but what does that mean? They didn’t say. It was a token gesture.

Wheely Good Fitness

So I decided to set up my own business, Wheely Good Fitness, running classes adapted for physically disabled people. That doesn’t mean they’re gentle or easy – they are pretty intense!

I currently run a variety of classes, including what is quite possibly the only wheelchair spin class in the world. We have a huge range of members, from people with slight mobility problems to those with very complex needs.

It’s incredibly rewarding for me because I can see the change in people. Within a few weeks they’re sitting up straighter in their wheelchairs, their flexibility increases, their confidence grows.

Suzy (right), one of our most committed members, recently pushed herself round a shopping centre for the first time in years. The change in her has been unbelievable.

Changing attitudes

I’m currently writing a set of qualifications for instructors, explaining how to create fitness regimes suitable for disabled people. My hope is that these will be accredited by awarding body Skills Active, which means the qualification will be available for instructors across the country to take.

I am so surprised that no one has looked at wheelchair-based fitness from a different perspective.

People seem to have got used to seeing disabled people as delicate and fragile, rather than as somebody who’s just got a different way of doing things. 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.

Getting fit and taking control of your body is just another way of demonstrating your capabilities – and suddenly, you’re taking down those barriers.

Find out more about Steptember, and sign up today! 

“My husband and I had to sleep separately”

We are currently running a sleep appeal. Has your child ever had problems sleeping? Here’s Sarah’s story.

Florence has autism and sensory processing disorder. For five years Florence wouldn’t sleep alone, meaning Sarah and her husband slept in separate beds so one of them could be with her. 

Florence always had sleep problems but they became worse as she grew older. My husband Nick and I had to sleep separately to guarantee some sleep for at least one of us. We had to stay in separate rooms because Nick was getting up at 6am to go to work and didn’t get back home until 8.30pm.

It was important from a family perspective that he at least got sleep on some nights so he could function at work. I could sleep when Florence was in pre-school, then Nick would take over at the weekends or nights when his next day was not so busy. We lived very strange lives.

We tried Florence sleeping in with her sister Isabella, because we thought she was scared to be on her own, but she still wanted us to stay with her until she went to sleep. She’d get off to sleep at 10.30pm and then be up again at 11.30pm. When she woke, she would be wide awake immediately and say she was bored.

Sarah with her husband and two daughters, sitting in a field
Sarah and her family

The toll of no sleep

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. However, because you’re under par having not slept, you have irrational thoughts all the time.

Because Nick and I were not sharing the same bed, I started to feel insecure about our relationship. If we weren’t the couple that we were it could have split us up. Fortunately our relationship is, and always has been, rock solid and it remains so.

Sarah, her husband and two daughters holding hands in a forest
Things started to change for Sarah and her family once she came across Sleep Solutions.

Discovering Sleep Solutions

I heard about Scope’s Sleep Solutions from a friend. I went to a workshop. It was ground-breaking for me, absolutely ground-breaking. Nick and I hadn’t had a night out in four years because we couldn’t get a babysitter that Flo would accept. We thought there was no end to it.

I came away from the Sleep Solutions workshop excited and empowered, and it wasn’t just me. I came home and shared everything I’d learned with Nick and we put it straight to work. The results were incredible.

Family life now

All of our lives have changed completely since this happened in June 2014. Florence sleeps well regularly and we still can’t believe it. I think I have just about caught up on my sleep after five years.

I don’t have bags under my eyes anymore. I have energy again and I feel like I’ve got fun in my life. I can spend time with my kids without being tired all the time. Family life is much better; Isabella can spend time on her own and Florence is much nicer to Isabella because she isn’t so tired all the time.

On last year’s summer holiday Nick and I spent every night of the two weeks in our own bed, with the girls in their room – that had never happened before!

Sarah is the face of our sleep appeal this summer.

Please donate to our sleep appeal so that more families of disabled children can get the support they need. 

The lives of 100 disabled people and their families – #100days100stories

Leading up to today’s General Election, we wanted to get politicians thinking differently about disability.

So for the last 100 days we’ve shared 100 compelling, moving and at times, shocking stories from disabled people and their families.

We’ve worked with our story-tellers to share their stories with their local candidates – reminding politicians of the big and varied issues disabled people are facing.

No ‘typical disability story’

Young disabled woman modelling a white dress, sitting in a wheelchair in a garden
Disabled model Hayley-Eszti.

Disabled lawyers, actors, models, travel writers, campaigners, entrepreneurs and politicians are among the 100 who have shared their stories.

We’ve heard about people’s attitudes, volunteering, communication aids, finding work, going to festivals, hate crime and what it’s like getting older.

We’ve also heard stories about hearing dogs, working with disabled people in the community and fostering.

Parents, sport and young people

Parents have shared their stories about communicating with their disabled children, juggling their jobs with looking after their kids, what it’s like spending a lot of time in hospital and the importance of peer support.

Sport and fitness has played a big part in many people’s stories – we’ve heard stories about wheelchair fitness, cycling, the Paralympics, golf and marathons.

From prison to the Paralympics: Craig shared his story
From prison to the Paralympics: Craig shared his story

And young people like Holly, Felix, Chloe and Nathan have shared their stories about their lives, aspirations and the challenges they’re facing. And young disabled campaigner Charlie told us what he would do if he was Prime Minister.

An overwhelming response

In the last 100 days we’ve had about 140,000 views of our story blogs and films, a huge increase from our usual blog and film viewings.

Our most popular story of the whole campaign was Carol’s, about life with an invisible impairment, followed closely by Alexandra’s story about being offered a termination while pregnant, and Jean’s story about getting a job with the bus company she made a complaint to.

Woman with glasses smiling
Carol’s story was the most popular of the campaign

We’ve had an overwhelming response to the stories on social media – nearly 60,000 people have liked, clicked, commented or shared the stories on Facebook and the hash tag #100days100stories has been tweeted more than 1,000 times just in the last month.

One Facebook supporter wrote: “This series is just brilliant. I have used several of the blogs as part of my MA research project. Keep sharing stories everyone. People need to hear them.”

In an article about charities’ pre-election campaigns, The Guardian wrote “we’ve especially liked how Scope has put its service users at the front of the campaign and enabled them to tell their story in their own words”.

girl smiling and holding a cat
Anna shares her story of countless hospital visits with her daughter Scarlett

Getting political

The campaign has allowed our story-tellers to connect with politicians in a very direct and personal way.

There have been some great responses to people who have taken part in the campaign from existing MPs and prospective parliamentary candidates. Hearing directly from constituents always resonates far more with both of these groups.

Today’s the day to have your voice heard

Woman sitting in a wheelchair, with a grey carigan and short dark hair, smiling at the camera
Rosemary urges disabled people to vote

Scope challenges politicians of all parties to improve the lives of disabled people – just as we have always done.

We’re calling on the next Government to raise disabled people’s living standards by supporting more disabled people into work; addressing the extra costs of disability and improving the support disabled people get to live independently.

It’s really important that politicians hear from disabled people – as Rosemary explains in her story. So today’s the day – go out, vote and have your voice heard!

Find out more about Scope’s priorities for 2015.

Take a look at all the stories we’ve shared during our 100 days, 100 stories campaign

If I was Prime Minister – #100days100stories

Every day for the 100 days leading up to tomorrow’s election, we’ve published the story of a disabled person or parent of a disabled child. On the final day of our campaign, we asked Charlie Willis, a young disabled campaigner with the organisation Independent Lives, what he would do if he was Prime Minister.

There are more than 11 million disabled people in the UK. As the 2015 General Election dawns, disabled and non-disabled people alike will be voting tomorrow for those candidates that they feel will best represent them in the Houses of Parliament.

If I were Prime Minister, I would hope to be able 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.

No. 1: A diverse governmentCharlie at a computer

Firstly, open up positions of power to different identity groups. A government should be representative of the people it supports, including identities formed around race, gender, sexuality, class and disability.

The present situation is far from this ideal: the diversity in our country is not fully reflected in the diversity of the Government.

By improving this, the country can start to champion the needs of the many, rather than the needs of the elite few, by fair and equal empowerment in terms of rights, visibility, opportunities and respect.

No. 2: An accessible country

Secondly, make spaces accessible for all. Accessibility is not just about ramps into buildings, but about all spaces being adapted to public need. Many disabled people still experience significant barriers to transport, buildings and the countryside.

Disabled people with varying impairments should always be included in the design process of new transport and the building of accessible lifetime homes.

This would work towards a Standard of Accessibility, by reviewing the accessible standards of building regulations to include hearing loops, quiet rooms or Changing Places toilets. By making everywhere accessible, people are empowered to get involved and have a voice.

No. 3: Empower peopleCharlie standing with a stick next to a poster

Thirdly, protect independence through welfare. Some disabled people are feeling the effects of changes to welfare, personal budgets and constant reassessments of need.

For those who rely on support to live their lives, the consequences of further cuts could be severe.

A tax on the richest people in the UK, and higher corporation tax, would ensure a future for the welfare state with adequate benefits for all that required it. Local authorities, the NHS and schools would have more money.

This would protect those with the most substantial need, empowering others to live more independently, being able to afford true choice and control.

No. 4: A change in attitudes

Lastly, reform attitudes within, and outside, government. In recent years disabled people have been repeatedly scapegoated and victimised in all areas of society. Representations of identity groups are linked to the behaviour towards them.

Images in the media that show disability are often manipulated and disabled people are represented as “weak”, “faking it”, or “scroungers”. Perhaps as a result, disability hate crime is on the rise.

Therefore, education needs to be inclusive of difference. The world of disability is a reality that everyone, at some point, will come into contact with, but is seldom taught about.

Representing disabled people in a more positive and radical light will end this manipulation and allow the creation of individual, empowered, identities for all disabled people.

Final thoughts…Charlie talking to a woman

Ultimately, disabled people and the organisations that empower them need to focus on the fight for independent living, and move the discussions in government towards preserving our civil rights.

Disability is a political issue. As Prime Minister, discussing issues around power, accessibility, protecting independence and our attitudes towards disability would help all people, not just those with impairments.

Independent Lives is a user-led charity supporting disabled people in West Sussex and Hampshire.   

Find out more about our 100 days, 100 stories campaign and read the rest of our stories so far

Three things the new government needs to remember about disability – #100days100stories

Guest post by Josie from Bristol. Josie has a number of impairments which affect her health and mobility; she uses a powered wheelchair. She is sharing her story as part of our 100 Days, 100 Stories campaign.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.Close-up headshot of Josie, a woman in her late 30s

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic  reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Two days away from the general election, here are three things the next government needs to do to make sure disabled people are better supported.

1.  Social care should support us to live, not just to survive

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean.

My basic needs are met – I’m clean and I’m fed. But I haven’t got any allocated support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

I understand why we’re in the position we’re in economically, but I worry that there will be more cuts to social care, and I really can’t see where they are going to come from.

2.  Remember that benefits are people’s lifeline

There’s nothing in my life that can be cut. Every penny that comes in goes back out, and I have to budget very carefully. There’s no ‘fat to trim’, as politicians like to say.

If, for example, my benefits were taxed, the money would come out of my food budget. I wouldn’t be able to afford online delivery for my shopping – I’d have to send a support worker, and miss a meal or a shower.

Josie, a disabled woman, smiling with her teenage son
Josie with her son Olly (her daughter Chloe is in the photo at the top of the page)

There’s a belief among some people that many disabled people don’t want to work, or choose not to. In fact, it’s the exact opposite. I didn’t choose to get ill, I didn’t choose to become disabled.  I actually found it very difficult to come to terms with the idea of claiming benefits.

Soon I’ll be reassessed for Personal Independence Payment (PIP), and I’ll have to justify myself again – there’s always a huge fear that what I have will be taken away.

3.  Disabled people deserve a role in society

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

The loss of the Independent Living Fund has been a blow – people like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

I’ve watched a lot of political debates such as Question Time over the past few years, and I haven’t seen a single person speak who uses social care. There have been a few family members, which is good, but disabled people should have a chance to speak for themselves.

A question of equality

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead 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.

Josie runs a website offering support to people with idiopathic anaphylaxis at www.iamast.com

Tomorrow is the final day of our 100 Days, 100 Stories campaign. Find out why we did it, and read the rest of the stories so far.

I had to vote in the car park as there was no wheelchair access! – #100days100stories

Rosemary Frazer is Campaigns Manager at Scope. In the final days leading up to the General Election, she shares her story of why it’s important disabled people are able to cast their vote as easily as everyone else, as part of our 100 days, 100 stories campaign.

Woman sitting in a wheelchair, with a grey carigan and short dark hair, smiling at the cameraI’ve been interested in politics for as long as I can remember. Friends and family tell me my interest borders on geekishness, but I grew up in Northern Ireland, where politics and politicians were a constant presence, so I suppose I could blame it on that!

I’ve always been a keen campaigner, mainly on disability issues as I am a wheelchair user. I had been supported by local politicians for various campaigns. I couldn’t wait to vote for the first time at 18. I remember going to the polling station, marking my ballot paper and folding it up before popping it in the box. I watched the election results come in late into the night (doesn’t everyone do that?). Unfortunately my favourite candidate didn’t get elected. First lesson of politics, you don’t always get to choose the winner!

What do you mean I can’t get in?

Ballot box with a hand posting a voteI moved to London in the late ’90s and in 2001 I was excited to be voting for the first time in London. I registered to vote, received my ballot paper and was all set. I got to the polling station and found that I couldn’t get into the building because it wasn’t accessible!

I couldn’t believe that they hadn’t sorted out proper access. It really did throw me! I was reminded of the time as a child I heard about the Suffragette Movement and thought ‘Why on earth would women not be allowed to vote?’ My thoughts were exactly the same about access at polling stations. ‘Why on earth would you not provide proper facilities for disabled people to vote?’

I had to vote in the car park

I kicked up quite a fuss and in the end a rather farcical situation ensued. The staff at the polling station physically carried a polling booth outside and I cast my vote in the car park. I remember feeling so angry and embarrassed as people arriving to vote were looking at me wondering what on earth was going on. I decided there and then I wouldn’t be going through that experience again!

Importance of voting and being seen to vote

Polling station signI had heard about Scope’s Polls Apart campaign to improve access to voting for disabled people and ended up getting involved with others in improving access, awareness and support in my constituency.

Access to voting hasn’t improved anything like as much as it should have done since my dreadful experience in 2001. At the 2010 General Election, Scope campaigners reported on 400 Parliamentary Constituencies and found that two-thirds (67%) of polling stations had at least one significant access barrier.

Participating and belonging

Young disabled woman votingPostal voting is a vital option for people who find it difficult to travel to their polling station. However postal ballots should not be an excuse for not providing good access and staff training. Indeed by not using accessible venues disabled people are further disadvantaged by not being able to volunteer at polling stations or counting centres.

It is really important for me to be seen to be participating in the same things that non-disabled people do. Taking part in the democratic process is a vital part of that.

My local polling station is now fully accessible with well trained staff. When I cast my vote on May 7th I will be able to do so just like everyone else. For me things have greatly improved but more work needs to be done and we need to keep pushing for better access and support.

I will still be staying up half the night to watch the results come in so perhaps I really am a geek!

Find out more about our 100 days, 100 stories campaign, and find out more about the lives of disabled people and their families.

Campaigning for change is very important to me – #100days100stories

Nathan, 19, is a wheelchair user and has been a campaigner on disability issues for the last 10 years. On 7 May he’ll be casting his vote for the first time. Here, as part of Scope’s 100 days, 100 stories campaign, Nathan reflects on campaigning and politics. 

I am a young leader of the Birmingham Ambassador Club for the charity Whizz-Kidz. One of my responsibilities under this role is to lead on the Space Invaders Campaign.

This is a campaign to raise awareness of the misuse of disabled car parking spaces. I quickly realised we couldn’t simply fight the campaign on the principle that you are not disabled so you shouldn’t park here!

Instead I fought the campaign on the issue of an improved economy. If disabled people are allowed to get a parking space, they can get out to work more easily, and shop in a store freely, which contributes to the local economy. It makes sense!

Voting for the first time

Campaigning for change is very important to me and I am really looking forward to casting my vote on 7 May in the General Election. I believe it is vital that disabled people engage with politics, as too often our issues are not discussed.

I am really excited and it got me thinking about how 10 years ago I started my very first campaign; it has been many years of hard graft, with sometimes sleepless nights, but it has been worth it.

The start of it all

Group of people in a political setting, three standing and two in wheelchairs,Back then I remember my mother telling me that a disabled person had to be carried into 10 Downing Street.

I knew that they had just passed a law that meant all public buildings should be fully accessible and so it seemed a bit strange that the official home of the Prime Minister wasn’t also classed as a public building.

I was so angered that I wrote a letter to the then Prime Minister, Tony Blair, and other ministers. I was contacted by the Parliamentary Officer at Scope, who invited me to visit Downing Street with them.

We went down to London and arrived at the famous black iron gates where I faced my first public relations (PR) task by being interviewed for Central Tonight, my local news programme.

They asked, “What’s next for you?” I couldn’t reply with the truthful answer “I don’t know!” I decided to go instead with the stock response, “I will hopefully do some more campaigning and become an MP one day”.

It’s hard work

From this first foray into campaigning I have had to work hard to ensure that I remain at the top of my game.

It is a common misconception that the only thing campaigners have to do is stand and talk about their issue, but there is a lot more to successful campaigning.

Many campaigning skills are the same skills we all need in any work situation, including critical thinking, presentation skills and understanding of financial and social trends.

Raising awareness

I do not accept the argument that the only way to gain greater public awareness for disabled people and the charities that support us is to make everybody you are appealing to sad all the time.

Whilst I appreciate that it can sometimes be very difficult for disabled people, I believe it is better to highlight the positives than the negatives and show what it could be like rather than play to people’s perceptions.

If like Nathan you are a campaigner between the ages of 18 and 25 and would like to develop your campaigns skills further email: campaigns@scope.org.uk for more details.

You can find out more about the lives of people like Nathan and others in our 100 days, 100 stories campaign.

Zimmer frames are the invention of the devil! – #100days100stories

Fear of falling, social invisibility and Zimmer frames. Valerie Lang, 75, discusses the realities of being older and disabled. She shares her story as part of Scope’s 100 days, 100 stories campaign

A portrait of Valerie Lang, 75, smiling.

I was diagnosed with cerebral palsy as a baby and started to walk unaided when I was six. My walking was inelegant but functional. Unlike many of my class mates, I was spared the horror of callipers. The children who wore them were so terrified of falling over in them that few, if any, learned to walk at school.

As a child, I was fearless. When I did fall, I was small enough to not do any serious damage. I would scramble to my feet and be up again in seconds.

I loved the freedom that walking gave me. I still do.

Help when I needed it

As a young adult, I studied and worked in London. If I fell over in the street, people would always stop and help me up. I’ve fallen in the middle of busy roads, landed in a heap at the top of a tube escalator, and been thrown from the back of route master buses. On each occasion, someone was always there to ask if I was OK.

Today, as an older disabled woman, I have become totally invisible. On the street, people ignore me, walk in front of me… some nearly walk into me, but fortunately they don’t because my mobility scooter would hurt them.

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 woman is kneeling on the footpath. That didn’t happen 30 years ago.

The bubble society

We live in a ‘bubble society’. So many people on the streets today are on their mobile phones, or in a rush to be somewhere else. It is as if we are all hermetically sealed into our own private little plastic bubble. We don’t have the time or space to think about the people around us.

I also wonder whether people are afraid of doing the wrong thing, and perhaps getting sued. Or it could just be that health and safety has won out and that people are no longer willing to take a risk.
Whatever the reason, it leaves me even more reluctant to walk anywhere unaided.

Fear of falling

As I’ve got older, I’ve learned that confidence matters far more than physical ability. I broke my ankle some years ago, just falling sideways from my own height. That accident shattered my confidence. If I do fall now, I can’t get up by myself. Today, when I leave the house, I’m all too aware of the potential dangers.

Unfortunately confidence cannot be summoned up at will. I have stood at the side of my car, looking at the six foot gap to my garden hand rail, and muttering to myself ‘don’t be an idiot,’ but I can’t take the first step. The fear would cause me to fall.

The art of walking

My mum always believed that if I only concentrated totally on how I was walking, I could learn to walk perfectly. I never did because I am unable to give full attention on placing my feet carefully for more than a few paces. I am much more interested in what I am about to do.

I use a trolley to help me balance and get around when I’m walking. I think that zimmer frames are the invention of the devil. To shackle old people to such clumsy objects is cruel. Turning 90 degrees requires one to pick the wretched thing up and move it round a bit, at least eight times. It is enough to put anyone off trying to walk. As with wheelchairs, anyone dispensing them should be made to use one first, for at least a week.

A step backwards?

I was lucky to be young in the 60s. In spite of the equalities legislation that has come in since, I was walking – albeit unsteadily – in a narrow gap in history when the few disabled people who were out and about, found society to be less judgemental than it may have been through history, and sadly seems to be now.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.

Why did Valerie campaign to change the name of The Spastics Society to Scope?

I’ve been tipped out of my chair and punched in the face – #100days100stories

Guest post from Simon Green, as part of our 100 days, 100 stories campaign

My name is Simon Green, I live in Bridgend, South Wales. I have a condition called Neurofibromatosis, which along with a freak accident has resulted in me having to use a wheelchair for the past 12 years.

I am Chair of Bridgend Coalition of Disabled People, a Trustee with Disability Wales and Coordinator with the Disability Hate Crime Network.

My life changed straight away, I expected it to, but I did not expect that having to use a wheelchair would result in hostility, but sadly it did. I was verbally abused, called derogatory names and deliberately tipped out my chair, and on one occasion punched in the face. The guy who hit me used the excuse that “he didn’t think it was right for a f***ing spaz to be out with a pretty girl”.

Campaigning for changeMan in wheelchair smiling

I have spent the past few years campaigning for more awareness in relation to disability related harassment and have heard some horrific stories of both verbal and physical abuse against disabled people.

But over the last three or four years I’ve been hearing more and more about a very different type of abuse, and that’s language like ‘scrounger’ and ‘benefit cheat’, especially against people with more hidden disabilities.

And this is where I come on to politics! Now I would not for a second directly blame any politician or journalist for someone attacking a disabled person but I believe politicians and journalists need to be careful with the language they use.

The power of words

Man in wheelchair at a rally
Campaigning for change: Simon Green

The constant talk of cutting welfare, suggestions that the state of the economy is down to the number of people claiming benefits and phrases such as “Strivers verses Skivers” do not help – and can increase hostility towards the disabled community.

I get extremely angry when such comments are made as they do a huge amount of harm.

Disabled people have votes, and if party leaders want these votes they need to cut down on the inappropriate and demonising comments.

Find out more about the Disability Hate Crime Network.

For advice and support call the Scope helpline on 0808 800 3333.

Find out more about our 100 days, 100 stories campaign and read the rest of our stories so far