My personal experiences of Cerebral Palsy

Melissa Parker is 20 and, as a result of a break from education due to surgery, is undertaking A-levels with hopes of earning a place on a law programme in 2013.

I first became interested in writing about my personal experiences of Cerebral Palsy when I read Andrea Dworkin’s article “Through the Pain Barrier” – it provided a forthright, fiercely earnest and human account of pain, disability and aging.

Being “normal”

It was also overwhelming because, having had Cerebral Palsy all of my life, it is difficult to remember that my experiences are not “normal.” They do not conform to other people’s experiences and perceptions. It was a moment of clarity, transparency, lucidity to remember certain times in my life that have been shaded, positively or negatively, by experiences such as these.

As a child I grew up with a mother who was determined that I would be “normal”, I did not in point of fact think there was anything out of the ordinary about myself until I was nine, and why would I? I had most of the customary childhood experiences: I played Mary and hit Joseph on the head, with a providentially, plastic baby Jesus. I would amuse myself by wearing toy high heels on my hands rather than on my feet, I would spend most of my early years as a quintessential tomboy complete with knee-length football shirt, which my mother had bought me as an Easter present, and quite naively as I then thought, assumed I would allow her to return it purely because it was too big. There were moments when my disability would affect existence, though I was apathetic about it, after all I knew and, as I realised when I read the aforementioned article now know no different. I had camouflage splints and a wheelchair which was yellow with red stripes. As I have grown those things have altered and as a consequence physically, emotionally and socially so have I.

I think numerous people automatically assume that disabled children are naturally angelic and my mother has always told me she did not know what to expect of a child diagnosed with Cerebral Palsy. However, what she got was, in all probability, the child most unlike the child she imagined, in terms of temperament, determined, stubborn and inquisitive. I would most often question all and make observations to an, in general, taken aback audience.

Side-effects of surgery

When I had the second surgery, I did have hallucinations I was an axe murderer, vivid dreams where, I admit, my wickedness took on an atmosphere akin to a Robert Louis Stevenson novel. This was as a result of potent painkillers and was a contributing factor in my decision to stop using them soon afterward. I refer to that period as my “Yellow Submarine” phase. Looking back I was a sixteen-year-old girl who had been pumped full of drugs it is no wonder they effected me so significantly furthermore it is also accurate to say that realism is difficult when your perceptions are so altered.

I remember a few things exceedingly, and sometimes dreadfully, distinctly so much is ambiguous and might not have happened, I remember most evidently the one split second of regaining consciousness, an overwhelming understanding that it was going to be arduous, laborious and exhausting nevertheless I was going to get on with it. This feeling occurred after both surgeries it was just, I believe, an innate knowledge that I had to.

I am fortunate to have had my mother as my supporter, the stoic woman I know, from the youngest of ages I wanted to emulate that strength, she has inspired me to fight regardless.

I was recently told that my disability made me determined to succeed I was initially offended by the remark it was so indifferent, listless. I can, after all imagine that any disability gives people determination, fortitude and resolve.

Botulinum toxin A

The one memory I will always retain, etched into my remembrance indelibly, is my experience of Botulinum toxin A, also known as Botox, anyone is considering trying it to treat Cerebral Palsy should not be put off by the following narrative, I am aware that it has helped many. However as I writing about my understanding of the events to inform others I believe it is important to give a sincere account of my experience. I was a young child when I had my first, and only, treatment with Botulinum toxin A, it was not effective however it was a distressing experience. I recall the first sharp pain, just as evidently as I do my Winnie the Pooh backpack, I remember being held down as the others were injected into my legs and I recall, most vividly, wondering why my mother and god-mother, who were both present, did not intervene. I have been asked since whether the fact that the treatment was not effective contributed to my antipathy toward the experience. I do not know. I do know, however, that I am pleased I tried it. One day there may be something which alleviates Cerebral Palsy and it is that knowledge that makes experiences such as these worth it.

The experiences which have built what I refer to as ‘character’ have been numerous and thus far I have been exceedingly fortunate that my physical world has been, comparatively, unaffected however there are instances when one is aware of physical barriers, mobility lessens when pain is enhanced is a truth as I have acknowledged

The one emotion I felt through the years, especially as a teenager, is frustration. It has motivated me immensely; I believe the teenage years are the most arduous phase emotionally, which has made me consider writing something that will be, I hope; an earnest and human account. I recently read Ernest Hemingway’s A Farewell To Arms and was most conscious of the following quote: “The world breaks everyone, and afterward, some are strong at the broken places.” It sums up my views and beliefs about my own disability and experiences.

 

Annual sports day at Orchard Manor

Orchard Manor sports day

Flat 2 were the team winners at Orchard Manor’s Annual Sports Day last week. The event was part of a themed Sports and Science Week this year, which proved very successful and interesting for everyone involved.

As in previous years, sports day at Orchard Manor was a great success. It is now a much anticipated annual event that both staff and the young people enjoy.

Following a fun, science-filled week, the sun shone on sports day making the home-made ice creams during the breaks very much needed and enjoyed by everyone.

With nine events in total, the teams competed against each other in a variety of activities from a sensory star hunt, which involved delving deep in wobbly jelly and slimy spaghetti, to joining together as a whole team to complete a relay lap of the Meldreth grounds in the fastest time, as well as volleyball, football and cycling.

All competitors in the games came away with a medal, sticking with the Olympic theme.

However, this year’s champions were Flat 2, now proudly in possession of the Orchard Manor sports day trophy, which is to be engraved with their name and stay within the flat until next year when they will be offered the chance to compete to win again.

Thanks to staff and volunteers for their support in this event, which helped make it a success, and the creative teamwork of the therapists and skills staff in coming up with some great events!

Scope CEO Blog: Watching the Dispatches undercover footage

Undercover filming

Coming out of a meeting on Tuesday morning, one of Scope’s press officers was waiting in my office, telling me that we needed to leave immediately to go and do some filming for Channel 4’s documentary series Dispatches.

Dispatches had filmed undercover footage of what happens when doctors are trained to deliver the Government’s Work Capability Assessment. They wanted me to watch the footage and give a reaction to it.

The Work Capability Assessment is something Scope has been campaigning on for a while now. This test was introduced to determine which disabled people would be eligible for out of work benefits, who would be eligible for specialist support to help them find a job and also identify those disabled people who would be expected to get a job straight away.

It’s a test Scope has had deep reservations about. We’ve been deeply worried about the implications of using a medical tick box assessment that ignores all the other barriers disabled people face in finding work, being used to identify who can go out and get a job.

Work Capability Assessment tests

Within 15 minutes of coming out of my meeting, I was sitting on a sofa in a studio watching something absolutely outrageous.

Disabled people would have been shocked and appalled as I was to see the reality of the way doctors were effectively being trained to leave behind all their years of medical training and deliver a test that even the trainer claimed was “almost unachievable”.

The Government has said time and time again that this test is fair, appropriate and not driven by targets. Yet quite clearly the doctors are being told to achieve targets of how many people they find fit for work or who need support and that they will be held to account if those targets aren’t met. This is a flawed test and it is being implemented in a damming way. How can decisions that can have a profound and devastating effect on disabled people’s lives be made in this way in Britain in 2012?

These are real people being assessed, up to 10,000 every week. We know that disabled people want to work but many need the right support to do so. And by being subjected to this flawed test they may be denied the very support they need to get a job.

Dispatches reveals a “toxic” system

The trainer in the film even said she felt the test was “toxic”, that it was “frustrating” that someone cannot have the benefits and are expected to find a job when she knew they didn’t stand a chance. For me, the footage didn’t just show that the test that was toxic. It showed that the whole system is toxic.

Yes this programme has to raise serious questions about how the test is being delivered, but ultimately the Department for Work and Pensions is responsible for ensuring that disabled people get a fair deal.

Many disabled people, Disabled People’s Organisations and disability charities have been trying to work with the Government to improve the test. There can be no more finger pointing or blame between the DWP and ATOS. They both have a responsibility and duty of care towards disabled people.

They should both be ashamed for allowing this to happen. And they need to take serious action immediately.

Take action now by emailing your MP

Launch of Face 2 Face scheme in Solihull

Solihull befrienders

On 9 July Face 2 Face officially launched its service in Solihull. The event was held at the Renewal Family Centre and was a combination of presentations to inform professionals how the service works and what the volunteers can offer local families, as well as moving and inspirational talks by both Solihull and neighbouring Birmingham befrienders.

The event was well attended by over 50 professionals who were keen to hear about what the service could offer the families they support in the borough. Their feedback was extremely positive and has resulted in a number of referrals following the launch.

Face 2 Face Solihull is now up and running, with half of the befrienders  befriending local parents and utilising the skills honed on their 10 weeks of training with a number more referrals being received all the time. All of the befrienders are themselves parents of disabled children and are passionate about being able to provide a unique support that they felt was not there for them when their own children were younger. Solihull Befriender Jan Quinney said: “Professionals are there, but at the end of the day they have not been through what you have. The reason the volunteers are uniquely placed is because they understand what the families are having to deal with.”

The Rt. Hon. Lorely Burt MP attended the event and presented eight newly qualified volunteer parent befrienders with their training certificates. She said that the service would be “wonderful” for Solihull.  She continued by saying, “What I have heard today is just how powerless and frightened people can feel when they get this awful news.”

The event was also a great opportunity to celebrate the partnership between Face 2 Face Solihull and Sainsbury’s Solihull (Poplar Way). Face 2 Face was chosen by the local Sainsbury’s branch to be their charity partner for the next 12 months. The store have been very enthusiastic about Face 2 Face and the service provided and are coming up with lots of ways to not only raise funds for the service but also raise awareness of the service locally to ensure as many parents of disabled children can be supported as possible.

In the first month, activities such as a cake sale, till point collections and an Olympic-themed colouring competition have been held in store. Sainsburys very kindly donated a cake to the launch event and Face 2 Face is very much looking forward to working with them over the next year.

Face 2 Face Solihull is now taking referrals. For more information please contact Co-ordinator Jo Bussey on 0121 444 8584 or by email joanne.bussey@scope.org.uk

My Olympic Torch experience

Guest post from Anne Barnes, Face 2 Face Birmingham

Anne Barnes representing Face 2 Face Birmingham

My bearing experience with the Olympic torch on 30 June has to be one of the most memorable days of my life, mainly due to it being totally surreal and bizarre!

I was honoured to have been nominated to carry the torch, for the voluntary work I do for Face 2 Face in Birmingham. It was great to see a troop of loyal befrienders there on the day with banners and flags, supporting and encouraging me.

On our leg of the relay, Smethwick to Cannon Hill Park (Via Birmingham City Centre) we were surprised to find that we had Sir Cliff Richard joining us! He was great, really friendly and generous with his time.

The actual run/walk of 490 yards seemed to fly past and was over too soon. I felt immensely proud and very emotional, it really is a “once in a lifetime” experience and I felt very lucky to have been picked to do this.

 

Financial pressures put strain on the strongest of partnerships

Charities and councils – whether it’s as givers and recipients of funding; commissioners and deliverers of services or campaigners for change and defenders of policy – have always had a love hate relationship.

But at the moment – with everyone feeling the pinch – you get the feeling there’s a bit more hate than love.

The challenges of making relationships between charities and councils work in the current climate were summed up in the provocative title of a recent Guardian roundtable that was asking whether or not it is really worth charities taking on the risk of contracts with the public sector.

This sentiment was echoed by the think tank New Philanthropy Capital at an event to launch their recent report “When the going gets tough: Charities’ experiences of public sector commissioning“.

At both events I argued that now more than ever we charities and councils need to be focusing on solutions rather than problems.

It would be easy to spend our time finger pointing, accusing reckless councils of cutting budgets without considering the impact.

But councils, like charities, are about improving people’s lives.

Working with the public sector gives us the opportunity to shape and create the innovative services that can make this a better world for disabled people. Charities have a tremendous ability to engage with and understand the needs of communities, so by working together with the public sector we are able to help shape the commissioning environment for the better.

But how do we do it?

I think that charities need to take a long hard look at themselves. How many charities are really clear why they provide services?

In many cases I think charities keep doing things because they always have. There was a time when vast residential services were both profitable and seen as the right thing to do – that’s both unrealistic and wrong these days. I suspect many run services because they’re trying to “help their beneficiaries” – but that’s such an old-fashioned way of looking at charities and over the years it’s an approach that has done as much damage as good. And apart from anything else, just because you’re a charity does not mean you are automatically capable of providing better services.

Why is Scope here?

At Scope we’ve really forced ourselves to ask why we run services. Scope does not exist to run services. Scope exists to bring about change in society – to make this country a better place for disabled people. We don’t have to run services. We actually don’t have to exist. We choose to exist because we want to bring about positive change. And we choose to run services because we believe that running services, the right services, can play a huge role. .

We have also forced ourselves to be clear about what we will spend our charitable income on. We’re not here to subsidise the state, and we must not play a part in taking society backwards to a place where people’s basic rights become dependent solely on the charitable benevolence of others.

I don’t think enough charities think like this.

Enormous challenges

There are clearly enormous challenges in this area at the moment, the unprecedented cuts to public spending above all. Local authorities are bearing the brunt of these cuts, which is obviously impacting on the fees paid to providers like Scope. And according to the Institute for Fiscal Studies only 6% of the cuts to Local Authorities have kicked in. With austerity set to continue until 2017 this means continued pressure on fees. Councils will have to innovate when it comes to providing services. They will have to re-design services de-commissioning redundant models to allow investment to go into those models which deliver the best possible outcomes for a lower price.

Partners

The charity sector should be at the heart of setting the agenda. We should recognise that we can get more done if instead of complaining, we respond positively to the changing world.

We are seeking to work as a ‘social partner’ with local authorities. Our Activities Unlimited programme is a new way to provide support to disabled children and their families seeking respite care or a short break to contact a range of opportunities from providers in Suffolk. Families are allocated a voucher that they can use on a range of activities. A dedicated Scope team identifies potential new suppliers, supports provider organisations to improve their performance based on feedback from users and signposts families towards services that are most appropriate to their needs. We designed and piloted the service in partnership with Suffolk County Council, sharing our mutual expertise and experience.

New horizons

We must also look at new ways of bringing money into this world. At Scope we are actively developing new, innovative, ways of raising money to allow us to generate investment capital, which will pilot new ways of providing services before we take them to local authority commissioners. Our £20 million social investment bond is will finance the expansion of our retail operation which will enable us to generate more unrestricted voluntary income which we can invest in creating new services.

I believe there are opportunities for charities to work collaboratively with the public sector to develop services that support disabled people to live their lives way they want to. We just have to be bolder, more confident and more creative – and seize this agenda now before it is too late.

My Moment to Shine by Jhon Bateman

Guest post from Jhon Bateman

Jhon, Olympic torch bearer

On Tuesday 3 July, in Loughborough, I carried the London 2012 Olympic Torch for 440 metres as part of its 70day relay across Great Britain before arriving at the Olympic Stadium on  27 July. I was runner 34 of the day, which meant that I was quite early on in the day – I had to be at the Collection Point for 8:00 ready to carry the torch at 10:42! The experience was amazing but over so quickly – the road was packed with people watching me go past, cheering me on and taking lots of photos. I loved it – I felt like a celebrity! I saw people I haven’t seen in years who had turned out to see me and young schoolchildren from the surrounding area all out ready to cheer me on.

After my leg of the relay, I got on to shuttle bus 2 at the back of the second convoy with all of the torchbearers who had already carried the torch. We were all so excited! Our bus was full of torchbearers waiting their turn but I was only the third on the bus, so I had a long wait afterwards. After travelling through three more towns after finishing Loughborough, we headed back to Loughborough University where our torches were decommissioned (this is where the gas canister is taken out) and given back to us.

I was quite a lucky torchbearer, as I was selected through the Coca-Cola selection campaign called Future Flames. Coca-Cola is one of the 3 presenting partners of the London 2012 Olympic Torchbearers alongside Samsung and Lloyds TSB/RBS. Future Flames are “exceptional young people who have been nominated by their communities”. As a Coca-Cola Future Flame, the Olympic Torch was purchased for you, you were given 2 VIP tickets to one of the Coca-Cola Special City Celebration events and photos are purchased for you!

Overall, I have really enjoyed the whole experience of being a London 2012 Olympic Torchbearer and will remember my Moment to Shine forever.

 

Bromley Council refuses to reverse textile bank decision

As a campaigner, I am often left with a mixed feeling of pride and disappointment. Leaving the Civic Centre in Bromley, after the Council meeting, was no exception. I felt extremely proud of the Scope charity shops staff and volunteers who led a local campaign to a meaningful conclusion, ensuring the significance of the issue came across, both in Bromley and more widely. But I found it difficult to shake off the feeling of disappointment that despite our efforts, Bromley council is maintaining a decision that could cost Scope £360,000 a year.

Since March, I have had the privilege of supporting the staff and volunteers from Scope charity shops in the Bromley borough. They have been encouraging their customers to sign a petition calling on Bromley Council to reverse their decision to evict Scope textile banks from council land, and to show other councils considering the move how unwelcome it is.

Campaign to save textile banks

The communities affected by this decision have launched an impressive and passionate campaign to save textile banks that act as a vital lifeline for their Scope shops. In only three weeks, the Bromley borough stores collected over 1,400 signatures from angry residents, opposed to the decision, and already we have heard that other councils are now wary of such a move.

The campaign came to an exciting close on 25 June, as we went along to  the Bromley Council meeting, to witness key councillors attempt to justify their decision, in front of the full council and residents.

The council chamber was full of spectators, and as Alex, Scope’s area manager, and Julie, the manager of the Petts Wood store spoke, the atmosphere in the room was tense. The overwhelming support we have received for this campaign was echoed by the loud applause Julie received as she finished her speech.

How loss of donations will affect disabled people

Despite this support, and the questions raised by opposing councillors in the debate, Councillor Smith, who is responsible for the decision, stood his ground. The removal of the banks in Bromley would dramatically affect our donation levels, and consequently impact on our work with disabled people and their families. This was clearly in the minds of all spectators as the councillor continued to explain why he felt Scope’s ‘privilege’ had now ended.

The support from the Labour and Liberal Democrat councillors, who requested the decision be referred back to the original steering group, was very welcome. There were questions raised on the transparency of the decisions made, and the true benefit to the community and other charities under the new plans. It was positive to hear our points be raised in the debate, and go a small way to reflect the outrage felt by Scope customers.

Despite this, the council voted to reject Scope’s petition.

Scope charity shops reaction to Bromley’s decision

Wendy Howden, manager of the Bromley Scope store attended the meeting, along with Julie.

I share Wendy and Julie’s disappointment at the decision. However, I remain positive that the support shown for this campaign is something we should be proud of. Bromley council were mistaken if they thought this change would happen without a response from Scope or the Bromley community. If we can join together to create such a brilliant, personal campaign in such a short amount of time, I have no doubt we can support the Bromley shops to be as successful as ever, and ensure this council decision does not impact on Scope’s essential work. We already know that other councils considering this type of contract have changed their minds, which is a fantastic achievement for the campaign and the future of Scope’s shops.

If you would like to support the shops affected in any way, please contact them directly: BromleyPetts WoodOrpington and Beckenham. I’m sure they would be grateful for your continued support.

We would like to thank everyone who signed the petition, and demonstrated an enthusiastic interest in this campaign. Your valuable support has sent a strong message to other London councils, who may be considering a similar move, of the strength of community support on this issue and the value of donations to charity shops.

We are always looking for enthusiastic campaigners to join us as we campaign on important issues such as this. Please join our campaign network here.

I look forward to hearing from you.

Olympic torch stars from Beaumont College

Jessica smiles broadly as her Olympic torch is lit, the flame bright against the grey sky. Despite heavy rain and flood warnings, thousands have lined the seafront in Morecambe to support Jess and her fellow torch bearers.

“It’s a moment she will remember forever,” says Jess’s mum, Louise. “I couldn’t be prouder,” she wipes away a tear and gives her 19-year-old daughter the thumbs up sign. Jess throws her head back and laughs – too excited to care about the rain which falls relentlessly, soaking everyone.

Jess is one of five disabled students from Scope’s Beaumont College – an educational service rated outstanding by Ofsted – who took part in the Olympic torch relay across Lancashire on 22 and 23 June. All were nominated for their commitment to giving disabled people a voice, their work spans everyday matters like more choice in the college restaurant to campaigning on national issues including cuts to legal aid.

“Since I’ve been at Beaumont, I’ve learned to be independent,” says student Tom Green, 21. “I like helping people get involved. I give talks in schools about being disabled and I do a lot of fundraising. When I was told I was a torch bearer, I just thought ‘wow!'”

Taking the torch from Morecambe to Preston

Tom is taking part in the relay in Preston. As he waits to take the torch from his friend and fellow student, Dan Crowe, 20, both families look on nervously. “This is such an exciting event,” says Tom’s dad, Peter. “We are exceptionally proud.” Moments later, Tom’s torch is lit and fitted to his wheelchair to loud cheers. “How are you feeling?” shouts a voice from the crowd. “Happy days!” responds Tom.

Vicki with a statue of Eric Morecambe.It wasn’t just Beaumont College students who took part in the Olympic relay. Vikki Brier, 53, a learning support worker at the college, was also a torch bearer. “It’s such a buzz that we’ve all been chosen,” says Vikki who is a tireless fundraiser for Scope and local charities. “To me, Beaumont College is all about creating opportunities. Taking part in the Olympic relay is, quite literally, an opportunity of a lifetime. We are making history!”

Vikki’s torch relay included a pit stop at the statue of Eric Morecambe, the comedian who changed his last name as a mark of respect to his home town. As she balances on the top of the memorial Vikki holds the flame aloft, so it appears Eric is holding the torch. “I think it’s going to be a couple of weeks before I come down from my cloud,” she jokes.

Unlike most torch bearers, who have a well-earned rest after their moment in the spotlight, Vikki, and Tom are now touring local mainstream schools with their torches (which cost £215 to buy!) to talk about the relay. “It’s also a great confidence boost for the young people. They were chosen as torch bearers for their achievements, not because of their disabilities. We are so proud of each other.”

Find out more about Beaumont College.

Birchwood artists

Disabled artist

The Birchwood Painters are a group of disabled artists living at Scope’s residential service in a semi-rural location in Chesham. Their work is being showcased at the Bucks Open Studios 2013 alongside the work of other artists and makers in the county.

Bucks Open Studios

Birchwood Painters Open Studios are an opportunity to make public the talent of the residents and acknowledge them in a wider arts community. The goal is to carry on producing extraordinary work and place the work of these artists in a contemporary arts context.

Art classes

Four years ago, community artist Anita Osborne was invited to come to Scope’sBirchwood service and give an art class. In exploratory art sessions, the residents tried various painting techniques. The first year was characterised by introducing art materials that best suited the needs of the artists. For that, the Jonny Rhythm Foundation has been supporting the group with funding initiatives in covering their art materials as well as other fees that have allowed the group to be part of a wider arts community.

“With the painting came this extraordinary outpouring of themselves and they have just been amazing,” Anita Osborne

The right equipment

There have been other institutions that have contributed to this initiative with equipment. The prototype easel, in Tina’s picture above, is fantastic piece of kit that has improved the access that the artists have to the canvases. Tina was drawing with it lying across her tummy so that she could get to every corner. Another great thing is that with this easel the artist can still have their talk boards on their laps so that they don’t lose their voices whilst they are painting. This easel enables and empowers the artists. With the right equipment in place there are no boundaries.

The art sessions

Disabled painter

At the moment, there are three people that facilitate the weekly sessions. Their role is to run around mixing paint, washing brushes while the artists are doing entirely individual self-motivated focused painting. Brian is one of the most recent residents to join the group. He has been with the service since he was 18 and he just turned 80. He didn’t want to paint, so he requested some pencils. His first piece, a drawing that he produced in his room, took him eight weeks to complete. Another artist, Mark Urwin, has developed a great interest in History of Art. The patron from the Jonny Rhythm foundation, an artist herself, has been providing him with tutoring sessions on Tuesday afternoons.

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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