The right to an independent life

Post from Alice Maynard, Chair of Scope

AliceDisabled people want to live independently in their community. We want to decide where we live, who we live with and how we go about our day.

In 2013, I think – I hope – most people would back that aspiration.

Unfortunately too often this doesn’t reflect the reality of disabled people’s lives, and this autumn we’re doing something about it.

Firstly, we’re going to be calling on the Government to be bold when it comes to reforming social care.

The current system is on its knees. The London School of Economics estimates that 69,000 disabled people who need support to live independently don’t get any. While, 40% of those lucky enough to get some support say it doesn’t meet basic needs like getting up, getting washed and dressed and getting out of the house. Yet Government plans, which will be debated by the Lords on 9 October, will shut 100,000 people out of the system altogether.

But if we want a bold response from the Government, we have to do more than shout from the sidelines. We have to show what’s possible by taking difficult decisions.

For example, we run care homes. We’ve taken a long, hard look at them all, and asked ourselves if they do enough to support disabled people to live independently in the community.

Staff do a great job, but many homes were opened in the 1970s, aren’t located in the heart of the community and are simply not set up to offer disabled people enough choice and control over their lives.

In the last five years, Scope has changed or closed ten of these services. We’re now proposing to change or close more over the next three years.

It’s the right thing to do. But it’s important we do it in the right way.

We tell the people most directly affected first, and before making a decision on a home, we consult with the people who live there, their families, staff and local authorities.

When we do change or close care homes, we will always do this sensitively and respectfully, supporting everyone affected by the changes to understand what they mean and what choices are available to them.

It’s very easy to demand that the Government makes difficult decisions. It’s much harder to make them yourself. Disabled people want to have choice and control over where and how they live. We think it’s right that the services we offer them make that possible.

Representing disability in the fashion industry

Guest post by Sarah Dawes from Bibble Plus who make bandana style adult bibs for drooling and dribbling difficulties.

Models on the catwalk
Models on the catwalk (Photo credit: Wikipedia)

The physical appearance of people with a disability has long been taboo, avoided in discussions at all costs. This is an attempt to escape the elephant in the room almost by pretending that disabled people don’t have an appearance at all.

We often hear people with disabilities talked of with sympathy, or with awe. As caring as these attitudes may be, they place an uncomfortable distance between those with disabilities and those without. They assume that a disabled body is something to be put up with, rather than embraced, not even exploring the notion that a disabled person might want to show off their body, not hiding the bits that are different.

It’s tiring to have to define people exclusively on a deep, emotional level, trying to find commendable characteristics to replace the physical ones that can’t be mentioned. Sometimes it really is about appreciating what’s on the outside. We spend so long dwelling on the significant differences between the lifestyles of the disabled and non-disabled that we forget all we have in common – those elements of being human that have nothing to do with disability.

One of these is fashion; whatever shape your body is, you probably take an interest in what you put on it. Portrayals of the human body within the fashion industry have long been a hot topic of debate, and the lack of representation of all kinds of groups, including different weights, ages and colours, has been focused on by the media. One group that is hardly ever considered when it comes to fashion, though, is people with disabilities.

The fashion industry’s almost exclusive use of men and women above a certain height, under a certain weight, and with everything in the “right place”, imagines that everyone can, or even aspires to, look this way. More than 11 million people live with a disability in Britain, and yet they are almost non-existent in the fashion and beauty industries.

There are some who have recognised beauty in figures that aren’t the conventional shape, though.  The campaigning group Models of Diversity have recently made a documentary, showing the work they do to get disabled models recognised. They meet with leaders in the industry to promote inclusivity within fashion.

One of the models interviewed, Kelly Knox, was born without a left hand. She was the winner of Britain’s Missing Top Model in 2008, has appeared on Gok Wan’s How to Look Good Naked, and opened Pakistan fashion week, as well as appearing in a number of fashion campaigns. She aims to challenge people’s ideas about what beauty means. Having been on the catwalk for big brand P&G, she wonders why other brands can’t also embrace models with disabilities.

Actor, model and trainer Jack Eyers was born with proximal femoral focal deficiency, and had his leg amputated at 16. Involved in the Paralympic Games, he hoped there would be more disabled models in the media after the Games were over.

Demand for disabled models is slowly starting to pick up and, with the help of campaigners and ambitious disabled models, we can hope to see a wider variety of body shapes on the catwalks and in magazines in the coming years.

Getting weird…with Jonah Sachs

The game changers

jonah sachsJonah Sachs is the CEO and Co-founder of Free Range Studios. He is an internationally recognised storyteller, designer and entrepreneur. He is also the author of the best-selling book, Winning the Story Wars.

First, let me say this open process is how campaigning should be done. Non-profit campaigns need to break expectations of their audiences if they are really going to change anything and get beyond the choir. That’s terribly hard to do for a group of people that knows an issue well, believes passionately in it and usually speaks to others who agree. Taking this beyond your four walls, getting weird ideas and testing will change everything.

So let me get weird right away and say that the “disability brand” is broken. And it has the opposite problem that most traditional product brands have. With a product, you usually have something inherently unemotional, unheroic and low stakes that you have to puff up and add meaning and connection to. In the case of disabled people, it’s the opposite. People naturally root for those who have the odds stacked against them but struggle mightily to overcome them. It’s considered the most basic goodness to show compassion and care for others who, through no fault of their own, have to work harder just to get by. Although many of us think disability doesn’t touch our lives, 1 in 7 people is disabled. We all know and love disabled people.

And yet, say the word “disabled” and the images that come to people’s mind will be mixed and muddled – and often invoke a spiteful narrative. That’s the level you need to be working on. The UN Convention will not be the lead. We have to start at the gut emotional level to redefine what comes to mind when you think disabled. Have you seen this video? That’s a new image of the disabled. Not pity and not some flat declaration that this guy has dignity. This is someone that makes us, the audience want to be better through his disability. It’s time for a new story about what disability is and what disabled people and their allies (the other key heroes of this story) can do. This is basic good vs evil. Don’t be afraid to say so.

“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain”

In July we introduced you to Team Scope athlete, Mike Jones, as he prepared to take part in Ironman Sweden. The following is an unknown text that he has come across which we’re sure will be very apt for a number of you: 

“In a race and finding it hard, look back, not just at the people who are running behind you but especially at those who don’t run and never will… those who run but don’t race…those who started training for a race but didn’t carry through…those who got to the starting line but didn’t the finish line…those who once raced better than you but no longer run at all. You’re still here. Take pride in wherever you finish. Look at all the people you’ve outlasted.”

These sentiments are even more appropriate for Mike looking back on his Ironman experience.

For those that do not know by now, I got to cross the finish line in Kalmar, however was outside “Lock Down”. But for me that was job done. This was the first time I’d completed the full 140.2 miles of an Ironman or Long Course Triathlon and what an incredible experience. When that moment came to cross that line, and even though it was late, I was given a reception I will never forget.

The people of Kalmar

A little about Ironman Sweden and  I hope to do the event justice. I have to start with the people of Kalmar and the surrounding area. A city that normally has 30 thousand people rose to over 100 thousand on the day. All around the bike and run course there were constant Ironman Parties that went on all day which created an atmosphere I have never experienced. Getting stopped in the street the following day and being greeted as a “hero,” “the man that did not stop” by people just out and about their daily lives is still leaving me speechless.

The course itself

The swim course was one of the most technical I have swum over that distance. Sighting was a little bit of a problem as I was not able to pick up the next turn buoy until late. But the last 1k at least brought you so close to the shore where the support was like swimming in a pool. This probably made it a bit easier as all I needed to do was follow the long line people shouting encouragement in their respective languages. Overall for me not a fast swim, but conditions were not that easy either.

The bike has been in the past for me where it has all gone wrong. I now have a new PB for the 112 miles, taking a massive 2 hours plus off my previous best. As for the course, the roads for the majority of the distance were like a race track (Britain you have a lot to learn).

The Marathon run course was 3 loops of Kalmar and district. It was quite early on when I felt the need to go into survival mode and with the words of Tracy Williams in my head, “every step forward is a step closer to the finishing line.” It took me more than 8 miles just to get into any sort of rhythm.

Determination to finish

At one point I had to sit down to consider if I was going to carry on, when a gust of wind blew me to my feet. It was time to believe – I think by this time finishing had become more important than time. If I was to analyse the run element then the following would be the key point: yes, I had trained for the run, but with past experiences I had not trained enough… surprising how much the mind influences training plans.

The reception coming into Kalmar at the end of this loop was in the words of Burt Le Berock, “unbelievable, just unbelievable.” The encouragement both from the people present and those at home over a thousand miles away was the drive to go on to the last 18k loop. This was going to push me forward. A few safety checks from the organisers and I was allowed to continue, I now just needed to give a little bit more.

The Name of the Game was to cover 140.2 miles and with the support of many this was done. Now is a time to reflect on what I have achieved and what I wish to do in the future. One thing I already know is that I will not be giving into my Neuromuscular Condition.

Future events?

Mike went on to get a great time in the Bupa Great North Run, setting a new PB for a half marathon distance. 2014 will prove to be a busy year for him, taking on the Bath Half Marathon in March, the Eton 10k swim in May and the Outlaw Long Course Triathlon covering 140.6 miles in July to name but a few! We wish him all the best as he continues his fundraising and for his events next year.

If you’ve been tempted to take part in a triathlon or endurance event then make sure you check out what we have to offer.

Film of the week: Fostering a disabled child – a true story

“For the first time in a long time, 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.”

In this new animated film (voiced by British comedian, actress and writer Arabella Weir) to promote Scope’s fostering service, we take a look at the story of Grace, Jenny and Tom. Thanks to the flexibility, support and comprehensive training they received from Scope, they were able to offer Grace the help and encouragement she really needed to turn her life around.

Scope always want to hear from people who are interested in becoming a foster carer for a disabled child or young person. This is the first of two new animations we’re launching to attract new foster carers. We want more people to know about this service.

Check it out below – and let us know what you think!

If you’re interested in finding out more about our service, please visit our Fostering service webpage.

Netbuddy is joining Scope!

Guest post from Lisa Quinlan-Rahman, Head of Digital at Scope.

We have some very exciting news. We are really pleased to announce that Netbuddy is merging with Scope.

Netbuddy is a very popular online community, and the practical tips and information on a range of disability topics, created and used by disabled people, parents of disabled children, carers and professionals, will be a really exciting addition to Scope’s community.

Of course, we need you to help us make it a success and want everyone to be part of this exciting new phase in our development.

Over the next few months, we will be asking you to help us shape our new online community. Please do get involved, as we hope to incorporate as many of your ideas as possible.

If have any questions, let me know below and watch this space for further announcements.

6 things everyone should know about Cerebral Palsy

Today is World Cerebral Palsy Day. Yesterday we asked you “what should everyone know about Cerebral Palsy?”.  Thank you to everyone who sent us a message, you can read more of the messages on Facebook.

Here are our favourites:

Cerebral Palsy does not define a person

Young adult using a wheelchair and man talking
Jamie wants to be an actor when he leaves college.
  • “People with cerebral palsy are exactly that. People. Just like everybody else. They love, laugh, cry and live. Just like everybody else. My four year old daughter is not defined by her CP. We are bringing her up so that SHE will define IT.” – Ellen on Facebook
  • “CP is a part of [my daughter] but she is and will not ever be defined by it.” – Cheryl on Facebook
  • “CP is a condition that needs attention but it’s not the person. If people could just spend some time to get to know him their lives would be enriched, as ours have been.” – Robyn on Facebook
  • “My son lives with CP, but it does not define him.” – Mrboosmum on the blog

Cerebral Palsy is not an illness

  • “People do not ‘suffer with CP’ as the Daily Mail would put it. It is not an illness.” – Catherine on Facebook
  • “It’s not a disease and you can’t catch it!” – Kerryanne on Facebook
  • “They should know that you can’t catch CP and that people with CP do – contrary to popular belief – have pride in their appearances.” – Rachel on Facebook
  • “You can’t catch cerebral palsy, you can talk to me x” – Lesley on Facebook

Talk to a person with Cerebral Palsy the same as you would to anyone else

  • “Just because the body might not work, don’t think that the brain don’t work either!” – Suzanne on Facebook
  • “People should respect you, it’s not our fault we have it.” – Deborah on Facebook
  • “Just because someone has CP, it doesn’t mean they are deaf or don’t understand what you say. Speak directly to someone, not about them, and not to their carer as if they aren’t present.” – Nadine on the blog

Cerebral Palsy affects people differently

  • “Each child is individual and should be treated as such. CP is a label but affects all differently xx” – Michele on Facebook
  • “Every disability is different and affects each individual person in a unique way this does not affect the way this person thinks and has they have the same feelings and thoughts as any other person.” – Juliette on Facebook
  • “Cerebral palsy can affect people differently my daughter has cerebral palsy but you wouldn’t know to look at her but she still has difficulties, people need to see past the disability my daughter is amazing and a true inspiration as are many children with CP.” – Chloe on Facebook
  • “People with cerebral palsy aren’t necessarily in a wheelchair and you can’t tell whether they have it just because they can walk.” – Victoria on Facebook
  • “It affects everyone differently and it impacts on the whole family , still wouldn’t be without her- every achievement brings a smile!” – Daniele on Facebook
  • “Even two people with the same clinical diagnosis can have very different challenges and opportunities.” – Mrbooksmum on the blog

People with Cerebral Palsy achieve things

Man with cerebral palsy piloting a plane
Nathan has cerebral palsy and is a qualified pilot.
  • “My son has quadraplegic CP and is in a wheelchair. This however has not stopped him climbing mountains, canoeing down rivers and raising money for his school. He goes to football, cricket, the theatre and lots of other events. Disability does not stop you achieving your dreams, it just changes the way you get there.” – Debby on the blog
  • “My daughter was born 23 years ago, and after a difficult birth, and 3 months down the line we were told she had cerebral palsy.  At 18 months she walked, she went to nursery, she went to primary, then secondary, then college, then university, and passed with honours. After taking a little longer, this summer she got a teaching job and moved to Birmingham with her supporting boyfriend who works at P.G.A golf. We are very happy and proud of our daughter. And thank you Scope.” – Marcella on Facebook
  • “Everyday I am humbled and privileged to be here to tell the tale, we all have individual journeys and challenges to face, but I for one am very proud of the progress myself and my family have made over the years!” – Liz on Facebook
  • “I’ve got Cerebral Palsy and I live an independent life. I work part time, I cook and I’ve been married to my husband for three years. My left side doesn’t work but I make the most out of life and try to keep smiling.” – Tracy on Facebook

People with Cerebral Palsy are loved

Girl with parents baking a cake
Molly with her parents.
  • “My little boy has CP and I wouldn’t change him for the world!” – Shelly on Facebook
  • “My son is 15 months old and was diagnosed with CP the day after his 1st birthday. Since then we’ve had another diagnosis of Semilobar Holoprosencephaly which means he should be a lot worse than he is, but he a super star!!! He can’t sit or crawl but he loves a good old wriggle. He babbles like mad and laughs like a drain! He makes everyone around him smile and I’m so glad he’s mine x” – Samantha on Facebook
  • “Hi there, my son is now nince, and only a year ago was finally diagnosed with unilateral hemiplegic CP , he also just recently was diagnosed with ASD. He lets nothing get him down, he does have learning disabilities but he is the most loving boy I could have asked god for.” – David on Facebook
  • “My son is 6.5 and has quad CP, visually impaired, gastro fed & seizures. He faces challenges on a daily basis that most of us never encounter in a lifetime but through it all he continues to give us the most amazing smiles. He’s truly special and the world would be much duller without him in it xx” – Kerry on Facebook

Do you agree? Did we miss something? Let us know in the comments below.

At Scope our wide range of services and activities are on offer to all disabled people. However, our history is based around cerebral palsy and we retain a particular specialism in this area. Scope offers home visits for parents of children newly diagnosed with cerebral palsy and lots of detailed information about the condition.

Francesca Martinez – the way society views disabled people

Today is World Cerebral Palsy Day.

Comedian Francesca Martinez came along to talk to Scope staff to give her opinions on disability, living with it and the way society views disabled people.

In the video Francesca describes herself “as being ‘wobbly’ because wobbly is accurate. It’s non-judgmental and it’s not scary…and we’re all wobbly sometimes!”

DLA and the road to independence

The game changers

Amy

Amy Jones is a disability rights activist with cerebral palsy. She’s passionate about social justice and cake. She is also the author of the blog In Bloom.

Disability Living Allowance (DLA) – We’ve probably all heard of it, but not everyone knows how much this benefit means to disabled people. As a young lady with cerebral palsy, I want to share with you how precious DLA has been for my independence and ambitions. In case you don’t know, DLA is paid to disabled people to help towards the extra costs of their disability and to enable them to cope with the daily challenges their disability presents. In my case, DLA enabled me to move away from home and go to university. DLA gave me access to social care, which meant that I could get help with dressing, preparing food, food shopping, and household chores. Without this help, I would not have been able to go to university and fulfill my lifelong ambition of getting a degree, simply because I would be unable to perform the basic aspects of daily living.

I knew from a young age that a degree could prove invaluable for my future employment prospects, being physically disabled, I realised my options for jobs were limited. So DLA will probably inadvertently help me get a job because it has enabled me to go to university and study for a degree which will make me employable.

My story is not unique, DLA helps disabled people participate in society. It gives them help with daily living. It enables employment and education. And it allows disabled people to meet their friends, go places and better manage their disabilities. Put simply, DLA is the fabric of a compassionate and civilised society because if you remove disabled people’s DLA, you are actively removing their support, which will stamp out their dignity, independence and ambitions.

If you would like to submit your story or find out more about the Game Changers community, visit the Game Changers website.

What should everyone know about cerebral palsy?

Man with teenager with cerebral palsy
Jamie from our school in Wales. Jamie has cerebral palsy and wants to be an actor when he leaves school.

This Wednesday is World Cerebral Palsy Day. At Scope our wide range of services and activities are on offer to all disabled people. However, our history is based around cerebral palsy and we retain a particular specialism in this area. Scope offers home visits for parents of children newly diagnosed with cerebral palsy and lots of detailed information about the condition.

Awareness days like World Cerebral Palsy Day are great opportunities to talk about and challenge misconceptions people have about conditions just like we did with World Down Syndrome Day, Learning Disability Week and World Autism Awareness Day. This year we’d like to hear from you!

What things do you think everyone should know about cerebral palsy? Let us know in the comments below, on Twitter or on Facebook.

Here are some messages we’ve had on Twitter:

https://twitter.com/Sandrararah/status/385027692170850304