“I love exploring the world with my son”

Last November, Marie and her husband Dan became proud parents of baby Mark. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. But the new family are finding inventive ways to enjoy time together.

Mark is now seven months and is developing fast. It has been amazing seeing him flourish and the satisfaction of knowing Dan and I are doing a great job is incredible. He is now onto three solid meals a day, plus his milk of course. He seems to enjoy everything that is put in front of him, but banana and broccoli are definitely his two favourites!

Marie feeding seven-month-old Mark in a park
Marie and Mark enjoying their local park

It is still very difficult that I can no longer physically lift Mark. He is now a third of my body weight and sitting down we are the same height! Even though we always knew this day would come, I sometimes wish he was a tiny baby again so I could relive being able to carry him.

We are, however, getting inventive and starting to see our local area in a whole new light. Our local play park has baby swings, which the designers have accidently put at the perfect height for me to push and play with Mark! He giggles and grins his head off the whole time. It is also really nice to be at eye level with him in such a care free ‘natural’ environment. Needless to say, this is now on our regular walking route!

Milton Keynes was clearly designed with all young families in mind, including ours. We have a comprehensive cycle network, separate from the roads, and you can guess what this means: complete safe level access, city wide.

To make the most of this, I have just got hold of a frankly awesome, new power chair. Provided by the local Wheelchair Service, it took a considerable amount of fighting and battling to get but it was worth it in the end. The new wheelchair can go up to eight miles an hour, which means once Mark is on his feet, and especially on his bike, we can have a brilliant time exploring the area as a family.

My new chair also allows me greater freedom around the home and is enabling me to do things faster, which comes in handy when Mark wants his breakfast! Mark loves the new wheelchair too, using the lights as a homing beacon if I am in it while he’s in his walker.

Dan and I are finding different and amazing ways to play with Mark together as a family. Mark’s favourite game at the moment is for us to sit at opposite ends of our 15 metre laminate hallway, while he runs between us in his walker, laughing his head off. Just that simple act of him running towards me on the floor, mouth agape, giggling like mad is enough to melt anyone’s heart!

We are now planning more adventures, trips away and places to visit, while life goes on in general. We are still completely overwhelmed by the positive attitudes we see and even complete strangers simply adore our little family.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People, That’s Life! magazine and Disability Horizons

The Price is Wrong!

Today we’re launching The Price is Wrong, an interactive online quiz that aims to raise awareness of the extra costs of being disabled. Working on this game over the past weeks has had a particular resonance for me.

Growing up with a disabled brother, it was evident from quite early on that there were massive differences in the cost of bringing us both up. This ranged from the extra costs my parents incurred driving him to regular physiotherapy and hospital appointments hours away from where we lived, to the cost of higher ticket items like the sports wheelchair he needed to compete on a wheelchair basketball team as a teenager.

The biggest unfairness that remains with me was the cost of our bikes. I was given my first bike for my 7th birthday, a purple and white “Miami Miss” BMX. As well as making me look cool – or so I thought – it was the extra independence from mum and dad and the chance to speed off with my friends that meant so much to me.

For my brother, this vital step took much longer to arrive. Not because he wasn’t able to ride a bike – he was – but because our parents just couldn’t afford the expensive, adapted trike he needed. His first bike was a clunky contraption that wouldn’t have looked out of place in a catalogue for surgical equipment. It had manual controls, looked a bit like a white, mobility scooter without the motor and lacked any kind of street cred whatsoever. It was also dangerously unstable and when he cracked his head open racing me and my Miami Miss downhill, was soon relegated to the garage. It wasn’t until he was 11 – four years later – that we finally had the money to afford a proper adapted trike, something that should be a rite of passage for every child much earlier on. The trike cost over five times the price of my Miami Miss and my dad had to drive an eight hour round trip to pick it up.

Our story is certainly no exception, but although extra costs are something that come up time and time again when we talk to disabled people and their families, the general public are relatively unaware of just how high these costs can run.

With the Price is Wrong, we wanted to create a fun and engaging way to start the conversation about extra costs with an audience that might not have any prior experience of disability. It is difficult to achieve a balance between discussing a serious issue and doing it in a way that really draws people in and gets them involved, but I hope we’ve nailed it here. I’d love to hear what you think though!

If you’d like to test your knowledge of the extra costs disabled people face, play The Price is Wrong.

And if you’d like to feedback your experiences of the game, feel free to drop me a line in the comments section of this blog.

For more information about extra costs, check out our extra costs campaign.

Paying extra to live my life – Jean’s story

Jean is 34 and has Ehlers-Danlos syndrome, which means her joints dislocate easily and she is in a lot of pain.

“I came home from work one day, fell over, was taken to hospital because I couldn’t get back up. I came out of hospital a week later in a wheelchair,” she says.

Jean, who lives in London, wants to get on and live her life – and for the seven years since she was diagnosed she has been trying to do just that. But she faces a huge range of extra costs relating to her condition, leaving her out of pocket.

Many of them aren’t obvious. Things like adapted cutlery and kitchen equipment are vastly more expensive than an ordinary set.

“I am supposed to have specialist knives to help me with preparing veg and things like that – with the handle at a 45 degree angle – but they are about £15 a blade. They are not covered by the NHS, you have to pay for them yourself, and we can’t afford them.”

Jean is a careful budgeter, tracking what she spends down to the penny. But she can’t scrimp on the things she needs or it can take a big toll.

“I have to eat a particular diet because my condition affects my gastric system, and if I am not very careful with what I eat then my gastric system will start going downhill. Our shopping bill comes to about £120 a week.”

“We had a situation a couple of years ago where we were living on essentially £50 a week, so we were buying the really, really cheap basic stuff. We managed to make sure we had enough to fill us but I was really ill. I was bed-bound for a year because I was having so many problems with my stomach and lower back and with pain in my hips and my pelvis. I couldn’t move.”

Jean has all kinds of other costs.

Some are really big. For example, Jean gets a basic wheelchair provided for her – but she really needs an ergonomic one to reduce stress on her joints, which is very expensive.

“You expect that any equipment you need you get from the NHS, you get for free, but you only get the very basics,” she says.

“I will be looking at around £1,200 to £1,500 to be able to get a wheelchair that suits my needs, and we can’t afford that at the moment.”

Others are more everyday costs, but still important. A trip into central London with her fiancé, Mike, via a wheelchair-accessible route costs an extra £6 every time.

“People think that because you are disabled you shouldn’t be allowed to have a normal life – to do the same things that they do. I’m just trying to have a normal life.”

Help us do something about the extra costs facing disabled people – join Scope’s extra costs campaign now.

Switch off so others can switch on

Technology can help disabled people control their lives.

We’ve blogged about how assistive technology in our Beaumont college and in services like Drummonds can help people browse the web, listen to music, use social networks and control their environments.

So why would we ask people to give up technology?

Digital Detox is this weekend. It’s a sponsored event which will see self-confessed social media addicts pledging to go without technology for 48 hours. Just like most fundraising events – it’s a challenge, and we ask people to raise money doing it. We’ve seen from our past participants just how challenging the weekend can be.

It’s also a chance for us to talk to a new audience. Many fundraising events involve running, cycling and swimming long distances – which aren’t challenges that everyone wants to take on!

There’s a more serious side to it too.  We polled 1,500 social media users and found that although people are most likely to feel amused (84%) or better connected to other people (69%) when they use social media, nearly a third (30%) admit that they actually feel lonely when they look at their social media feed.  Shockingly, half of 18 – 34 year olds even admit that their social media feed makes them feel ugly or unattractive.

It’s ironic, but by giving up their online presence for the weekend, participants are helping support our work, giving people like Jamie their own voice:

Would you like to join others fundraising for Scope by reconnecting with the analogue world? Sign up for Digital Detox.

 

Independent Extra Costs Commission launched today

Update: Submissions of evidence and stories to the commission are now closed. Thank you to everyone who took the time to take part.

Today marks the launch of a year-long independent inquiry. It will explore the extra costs that disabled people and families with disabled children face in England and Wales.

Disabled people and their families should be able to learn, work and get involved in the community without extra costs. But instead they must spend £550 a month on average on disability-related costs. From paying more for transport to work to the cost of an electric wheelchair, from higher energy costs to more expensive insurance, disabled people and families with disabled children pay more just to live independent lives.

Robin Hindle Fisher chairs the Extra Costs Commission. He has brought together high-profile, expert Commissioners including independent consumer advocate and Vice Chair of the Fuel Poverty Advisory Group Teresa Perchard and TV presenter and disability campaigner Sophie Morgan. They will consider evidence and steer concrete solutions to drive down extra costs.

Share your experiences of extra costs

The Commission is seeking evidence from disabled people and parents of disabled children. They want to hear:

  • your experiences of extra costs
  • how extra costs affect your life and financial situation.

Submit formal evidence to the Commission

The Commission is also seeking formal evidence from researchers, policy makers, local authorities, businesses, consumer rights experts, Disabled People’s Organisations and advice agencies, and more. They welcome evidence in response to two main questions.

1.  Rebalancing markets

Disabled people rely on private sector companies for many products and services. We’ve made huge progress in opening up opportunities for disabled people over recent years. Advances in technology have brought big improvements in independence and participation. But all too often, these come at a high – sometimes prohibitively high – cost.

Political parties and the commercial sector are starting to recognise disabled people’s spending power, but businesses, investors and governments have taken few steps to harness the so-called ‘Purple Pound’.

The Commission:

  • wants to know how the market is working for disabled people
  • wants to know about the quality, choice, price and availability of products and services
  • welcomes suggestions for how markets could better drive down extra costs.

2.  Changing infrastructure

Inaccessible housing, town-planning, transport, energy and services can make life cost more. For example there is a strong correlation between suitability of housing and disability-related spending.

The Commission:

  • wants to know how this affects disabled people.
  • welcomes suggestions on changing infrastructure to improve access, meet needs and drive down extra costs.

The Extra Costs Commission means a real opportunity to drive down the extra costs disabled people and their families face. But they need your evidence and experiences to make a difference. Please get involved.

“I don’t like to think of us as disabled or able bodied, I just like to think of us all as athletes.”

Guest post from Bethy Woodward who’s competing in this year’s Commonwealth Games.

As I’m about to compete for the England squad in my second Commonwealth Games I think about how far I’ve come, but also how far para-sport has come.

This year’s Commonwealth Games will have the biggest para-sport programme in the history of the Games, and we’re integrated in with all of the other sporting disciplines too. I don’t like to think of us as disabled or able bodied, I just like to think of us all as athletes.

Because of my Cerebral Palsy, it’s like breaking through a brick wall when I race. You have to keep saying to yourself “Come on, push it! You’re going to do it” It’s like the Cerebral Palsy parts of you are lazy and you have to motivate them to do it. But it’s when I do that, then my body listens to me, and I can achieve amazing things.

I’ve always pushed myself from a young age. I loved being outside and being active, rushing around, abseiling off cliffs! I did struggle a bit to find an athletics club that would be willing to coach me, but there was one coach who showed an interest and encouraged me. With his support I started getting into competing, and I’ve loved it ever since.

It’s strange because there’s a sort of calmness that comes over me when I get onto the track, at the Athletics World Championships last year I got a silver medal in the T37 200m, and I also ran a personal best. I was concentrating so hard on the race that I didn’t even realise I’d won a medal till I looked up at the board!

The 2012 Paralympic Games were like nothing else, and it had always been an ambition to compete in our home Games. The fact that I went home with a bronze and silver medal was the icing on the cake! The crowd were completely magical, and their support meant so much to me.

In the Commonwealth Games I’m actually going to be competing in the long jump F37/F38, which is something different for me. It’s so great though to always be pushing yourself to try new things. A lot of people allow their disability to rule them but I like to think I can rule my disability.

The training can be around-the-clock, but I think that really makes me appreciate the time off I get to spend with my friends and family, and especially getting to just hang out at home with my two dogs.

I guess there are always more goals I’d like to achieve, another competition coming up, another personal best to beat; I don’t think I’ll ever stop striving to achieve more.

What would I like to do next? Well a trip to Rio in 2016 would be nice!

Follow Bethy on Twitter.

“So great you’re getting out the house” – Tips for traveling as a disabled person

Guest blog from TV presenter and campaigner, Sophie Morgan.

Sophie skingEarlier this year, I flew to Italy with an organisation called Disability Snowport UK. The plan was for us all to meet at Gatwick airport a few hours ahead of check in time so we would avoid any unnecessary and often unavoidable dramas that could arise when flying with so many different access requirements and special needs.

I arrived at the terminal on time and quickly spotted the group who were huddled by a cafe chatting; given that there were six wheelchair users on the trip it was hard to miss us! I wheeled over and introduced myself to everyone, before turning to go and buy a cup of tea.

“Morning love”, said the chirpy girl who took my order. “Where are you lot off to then?”

“We’re going to Italy,” I explained. “To learn to ski.”

She paused as she poured the hot water, “ahh, isn’t that nice!” She smiled down at me. “So great you’re getting out the house.”

I took my tea and returned the group. Six happy, independent, adventurous and fun loving young disabled people all smiled at me as I took my place amongst them but I didn’t smile back; I was angry.

What was it about a group of disabled people being together that brought out the ignorance in people? Why did that lady presume we didn’t get out the house much? Especially when in the past six months I have been getting out the house a lot! Travelling to New Zealand, Australia (three times), Cambodia, Malaysia, Morocco, Scotland and France to name a few! In fact, I had probably been to Gatwick nearly as many times as she has working there! So why did I suddenly feel I was no longer an individual, I was just a stereotype?

Sophie at the costThe reason I tell this story is because it is not uncommon and it is certainly not acceptable. Whether I travel by plane, train or automobile, it seems there invariably always comes a point when a problem with either attitude or access arises.

The more I travel – and I am actually writing this from seat 44D on Cathay Pacific flight from Hong Kong to London – the more I am noticing that it is often the attitudinal barriers that are making me feel more restricted, not just the physical ones.

So, where do we start?

One of the major inhibitors of change in the UK of course is money. The disability policies of these travel companies don’t seem to think we are worth adapting for, we aren’t valued enough. And it’s this word that I think is key. What is our value?

Instead of airlines, train companies and taxi firms thinking of meeting our needs purely from a corporate responsibility perspective, being morally and politically correct, what if they thought of our demographic’s spending power, or so-called Purple Pound, which is an estimated £80 billion. Yes, eighty. Billion. If they built it, we would come!

We have to show the travel industries that a change in their attitude will make a change to our lives.  It is up to us to be the change we want to see!

On that note, I want to recommend a few things which have helped me over the past decade of traveling as a disabled person.

Get advice. Thankfully websites like Euan’s Guide (which Professor Stephen Hawking endorses) and the brilliant Blue Badge Style offer some invaluable advice, and there are always people online to ask for tips and pointers like myself and others.

Plan for the worst and hope for the best. I often expect to be treated poorly at airports for example, as then when I’m not, it’s a bonus! I was once poked in the legs continuously by a group of curious Indian security women because they didn’t believe I was paralysed, accordingly I missed my flight. I also had to be fireman’s lifted onto a flight in Nairobi once as there was no ambi-lift.

Don’t settle for anything less. I really think this is where we can make waves. We MUST complain, speak up or express ourselves when we have experienced discrimination. Be it to your local taxi firm, council, MP, media outlet or friend, if we don’t talk about the problems we are all facing on a day to day basis then nothing will be done. The Equality Advisory and Support Service (EASS) will also advise you on your rights via their helpline: 0808 800 0082

The world is yours. Everyone has the right to travel, to see the world and follow their hearts, and where there is a will there is a way, or as my mum says, ‘where there is a wheel there is a way!’ Please don’t let fear get in the way; all of these horror stories can be overcome with enough planning, guidance and a good sense of humour.

And if anyone ever needs any advice or just someone to rant to please get in touch via my website . I would love to help if I can, that is of course if I’m not too busy yelling at a poor unsuspecting taxi man or confused looking air stewardess about my rights!

Happy travels and good luck.

Sophie shares some of her experiences in our End The Awkward films.

Making the case for the right to independent living

Disabled activists are coming together for a summit on independent living this week.

It’s vital and urgent. It comes as expert Jenny Morris looks at progress against the 2008 Independent Living Strategy that was backed by all parties.  She told me that ‘for the first time in the history of modern British social policy that things are going backwards’.

I’ve written before that for many disabled people, me included, it’s a daily struggle to get the support we need to live in a way that most people take for granted. I need support from a personal assistant to simply get up, get dressed and get to work.

I am acutely aware how fortunate I am that the council covers most of my care costs. Getting that support was extremely difficult. And now I’ve got it there are endless caveats and restrictions. For instance, sometimes I have to choose between getting support to visit elderly relatives or to go shopping to buy essentials. The council provision doesn’t cover both. None of the support covers the work I do for Scope – that has to come out of our own funds.

Those limitations can be intensely frustrating. But for many disabled people the restrictions on living their life, as a result of the ever increasing rationing of care, are much greater.

We have to make the case for a better funded social care system, which provides support that contributes to, rather than takes away, independence. Neil Crowther is absolutely right to re-ignite a discussion about the future of support for disabled people.

But that job has suddenly got much harder. I’m really worried about what appears to be a growing level of cynicism about the very principle of independent living – our aspiration to choose where and with whom we live and how we go about our daily life.

Last week as part of a debate on care homes, Labour MP Gavin Shuker argued that “there will always be some people whose condition is severe enough to rule out other options of care”. He is backed by a growing group of politicians who feel strongly that some disabled people simply can’t live independently. Michael Ellis MP joined the debate challenging the notion that care homes needed to change.

Meanwhile doubts over the principle of independent living are spreading in the media too.

Alice Thomson, a writer for the Times, recently described the prospect of living independently rather than staying in a care home as “no picnics, trips to the theatre or hair dresser — just long, lonely, empty days”. Her argument is that there isn’t enough cash in the system for people to be supported to live independently – so, should disabled people therefore shrug their shoulders and march back into care homes?

Further undermining the case for people being able to choose where and with whom they live, influential campaigner Rosa Monckton recently said in the Mail: “Local authorities argue that it is ‘a human right’ for people to live independently in the community. However, I am convinced this is a financially convenient ideology”.

It all feels a far cry from the moment in the 70s when disabled care home resident Paul Hunt organised strikes, management takeovers, and effectively led an exodus of residents from a large care home he later described to the Guardian as an ‘isolated, unsuitable institution’. This kick-started the modern-day disabled people’s civil rights movement.

I think this new cynicism in part comes from confusion about what we mean by independent living. We don’t necessarily mean living on your own – unless, of course, you want to. We mean having the right to make basic decisions about your life, and having the structures and support in place to make this a reality. New types of care mean we can support people even with very complex needs to make important choices.

We have come a long, long way.  As the Care Minister Norman Lamb recently said care homes are no longer the default. Yes, we have to acknowledge that the approaches we’ve taken haven’t always worked for everyone. But that should drive us to find new solutions not to abandon the principle and goal altogether.

We have two huge tasks in front of us. We have to make the case for a sustainable care system. We also have to re-double our efforts to make the case for the basic principle that disabled people aspire to the same kind of ‘ordinary lives’ and opportunities as anyone else.

“I’ve talked about doing a marathon for 10 years, and this was the catalyst”: #100days100stories

Dan and Mel first shared their story in July 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

Dan and Mel’s son Oliver was recently diagnosed with cerebral palsy. Despite seeing specialists since a very young age, they had a long battle to get Oliver properly diagnosed, including nine months’ worth of tests.

“Oliver was different to other children, and we couldn’t explain why. Because of the issues and complex needs he had, he would do things like lick the radiator and lick the floor where it was cold. You’d go out into an environment where there were loads of other kids, and it was very obvious that he was different but we couldn’t explain why. You’d put him down on the floor and he would only crawl a little bit and then he would start eating the end of the table. We laugh at it now because we understand what he’s doing and why he’s doing it, but until that point we closed ourselves off and saw fewer people. We didn’t really want to go out – not because you’re ashamed, but you couldn’t turn round and say ‘This is why he’s behaving that way’.”

Dan and Mel's son, Oliver
Dan and Mel’s son, Oliver

Mel explained that it was incredibly hard to get a firm diagnosis, “but as soon as we got one and accepted it, it made us even more proud of him. We knew he had problems, but we didn’t ever dream he’d have cerebral palsy. I even remember saying at the beginning [of the road to a diagnosis], ‘Oh yeah, but it’s not like he’s got cerebral palsy or anything, it’s not so major.’ He doesn’t look like what many people would think a child with cerebral palsy looks like. He can walk and he’s got a voice – he’s non-verbal, but he has a voice and he uses it.”

Oliver’s condition left many paediatricians guessing for nine months, with Dan and Mel persisting that his behaviour wasn’t right. “At first we went to a private paediatrician who told us there was nothing wrong with him at all. It was at a young age, but other things had been picked up by health visitors. I contacted the NHS to get him into the system and the paediatrician we got is fantastic.” Putting Oliver through months of tests was difficult on his parents, and particularly Dan. “It was certainly hard putting him through it, watching him being tested. He was getting to the point where he understood enough to know ‘Oh, it’s another person prodding me.’ He would cry as soon as somebody came near him, because even though he didn’t understand everything, he understood that things were going on. That was quite difficult.”

For Mel, she was determined to get a diagnosis. “It was really important to me. Not that it changed anything – I don’t care if he’s got two heads! But it mattered, and I can’t explain why. The moment we had a diagnosis and it had sunk in, for both of us it felt like a weight had been lifted.” Dan goes on to explain that “there were definitely more tears shed in the run-up to the diagnosis than since the diagnosis. We do not feel sorry for ourselves or wish for different things, whereas before we were searching. Now there’s no need to search – it’s difficult to get the diagnosis, but once you do it’s a lot of help.”

Dan with Oliver
Dan with Oliver

Dan and Mel are clearly both very committed to their son, persisting to ensure he has the best support and stimulation possible including occupational therapy and sensory integration. It’s clear they have an eye to the future but it is still very early days for them in terms of Oliver’s diagnosis. Getting Oliver’s diagnosis was the catalyst for Dan to take on a challenge he’d been talking about for 10 years – the London Marathon – an emotional rollercoaster or excitement and apprehension. “I went through a phase where there was lots of pressure – you just think to yourself, ‘I just can’t let anyone down on the day’.”

The couple chose to support Scope as it captured a charity that helped others with similar needs to Oliver. “It goes to helping people, that’s the main thing.” Thanks to the overwhelming response of friends, family, colleagues and strangers, Dan has now raised more than £15,000. As well as support at work, Mel explained that Oliver’s nursery did a mini-marathon. “All the kids walked round the park – they raised £1,200, and that was just amazing. I think it makes a difference that it’s his first time running, and we’ve just had the diagnosis. For us, it’s been wow! We didn’t dream we’d get anywhere near this.”

There are still places available to run this year’s Brighton Marathon for Scope on Sunday, 12 April.

Find out more about the 100 Days, 100 Stories project.

“With music there is no barrier” #100Days100Stories

We first shared the story of Truth, a young rapper with cerebral palsy, in July 2014.  We’re republishing it here as part of our 100 Days, 100 Stories project.

Truth is a 23 year old rapper, songwriter and producer from New Jersey. He moved to the UK at the age of 12. By the age of 14, he had began writing and recording his own music. His debut album is released on 10 August and tells the story of his life not only as a struggling rapper but as a disabled man.

Hi guys, I’m Truth and I have cerebral palsy, however, that isn’t what defines me. There’s more to me than that. I make music and by this I don’t mean I’m in a marching band. My weapon of choice is the microphone and I try to use it to tell stories, to entertain and to evoke emotion. Some of the songs I make can be seen as controversial but that depends on how you listen to them.

The majority of my songs are about what happens to me and people like myself on a daily basis. Things which, in my opinion, seem to be glossed over. Shop and club owners using health and safety law to take away our sense of humanity and equality. People asking how we have sex and people refusing to give us job opportunities.

Young disabled people don’t really have a voice in popular music and society doesn’t really know how to accommodate us. Where do you send a 21 year old that just wants to get out and do something with their life?

Music is my escape. With music there is no barrier. There is only one requirement: can you bring it?

My album entitled ‘Don’t Diss my Ability’ comes out 10 August and will be independently produced and released by myself. I want to ask people to buy it because I think the message needs to be heard and I will use any proceeds from it to fund a UK live music tour where I can really allow society to see things from our perspective.

If you’d like to know more about me and the music please visit:

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