This commitment is even more inspiring given that Anna, who has cerebral palsy, needs a powered wheelchair to provide her with independent mobility.  Her previous power chair, provided through local contacts would break down frequently, often leaving her stuck for several hours until her parents could arrange to pick her up. In March, Priority, working with Newlife funded a new powered wheelchair that will provide Anna with the independence she needs to get on with her life.

The new wheelchair is slimmer and better fitted to Anna. “It’s letting me do what I want to do and now I can chase the children at school!”

This September Anna is due to start her degree course in teacher training at Canterbury University and is very excited about going. However her local authority has still not confirmed that they will fund the carer that she obviously needs to be away from home and live independently. As her Mother says “the fraught experience of trying to establish how Anna can access support at university has served to show huge gaps between what the government promotes and how that is delivered at any local level.” Despite this Anna is confident that things will work out, but seems calmly resigned to the fact that there will always be a struggle when it comes to accessing the correct support that she needs.

This reaction comes from many frustrating experiences. At 4 years old, when applying for a wheelchair from the local authority, her mother was told “but she’s terribly young, does she really need one?”. Later, after an application for a wheelchair had been with the local authority for 18 months, they were told it had been ‘lost’.

More recently, when deciding which university to attend, Anna came away from one feeling that she just wasn’t welcome. They told me the course was “very stressful, obviously trying to put me off”. Canterbury however seems to be different, with good facilities to support Anna’s needs. But this simply highlights the different levels of service provision around the UK.

Anna’s mother expects this to continue: “Children’s services, despite all their own weaknesses, do at least have the impetus of statutory requirements (children have to go to school, must be cared for etc). Once you come under the ‘Transition’ team it seems you become a whole different ‘problem”.

The new wheelchair is allowing Anna to look to the future. Her Mother is delighted:

“Your donation, via Newlife, has made a real difference to us and the wheelchair makes it possible, in the vital, practical sense, for Anna to achieve her ambitions.”

It also meant that Anna could to go to this summer’s Glastonbury festival, where she saw many of her favourite bands, including Stevie Wonder. Fortunately the good weather meant there was little of the infamous Glastonbury mud to get stuck in!

Hannah already has a tricycle which she received in 2003 and which she absolutely loves but she has now outgrown it and it is also extremely worn on several parts such as the knee supports. Following a major operation in 2005 a trike is more important than ever to Hannah because she now has one leg shorter than the other and a trike not only allows her to exercise and keep fit, but also helps to straighten her leg which twists frequently.

Hannah’s Mum explained that a new tricycle was vital so that she could share outdoors activity with her daughter and because of the physiotherapy benefits.  She also mentioned that her daughter sleeps better when she has been on her trike and is less restless.  Perhaps most importantly, a trike provide happiness and fun and this she summed up by saying: ‘it brings a smile as wide as the ocean to her face.’

Priority , working with Whizz-Kidz was able to fund the trike, which Hannah received August 2009 and she absolutely loves it as you can see from the smile on her face.  The pictures below were taken in December 2009 and show Hannah on her beloved red trike.  Speaking of the difference, the equipment had made, Hannah’s Mum said:

“Hannah is very severely disabled and the bike provides one of the only ways for her to get exercise. It is also a great way for her to meet other children – kids who would be put off by her big wheelchair will come up to her when she is on her bike and ask questions or just admire it.”

Once upon a time, disabled people lived in a small part of town known as medical model ville. With efforts to cure or keep disabled people away from society, one could say it wasn’t the best part of town. Gradually over time disabled activists and campaigners have spread the good word of social model ville. Here, ramps were invented, friendships forged and careers blossomed. Now, this move isn’t quite the end of our story because while social model ville offered improvement – not everyone could truly reach this place. The key to a disabled person living a fulfilled life is by having choice and control. If you cannot get out of bed when desired, how can you access that building, meet the love of your life or get that promotion. Progress was made towards the land far away, but storms would continue to trouble this journey.

It is seen more recently that the destination of ‘happy ever after’ can be reached through updating our systems and processes. In the past, social care was delivered by Government Local Authorities, who assessed a disabled person for their needs. They then commissioned what service was required to satisfy that need, as well as when it would take place and by whom. Thankfully this is now being recognised as an inefficient use of the lands resources. It is all good seeing a problem but in this land a solution is required too.

Out of nowhere a knight on a white horse appears on the horizon. Their name is ‘personalisation’ and their aim is take all the rules that have existed and turn them upside down. The knight is not a threat to other knights with other agendas; Personalisation knows his groundbreaking views will allow the beautiful landscape and opportunities that exist to be enjoyed by everyone. So what is this dude on the horse really up to?

By letting the rulers of the land, known as the Government, to assess the person and hold the budgets, we begin as we were before. However instead of directing which of the merchants in the land (social care providers) should support disabled people, the money is given direct. allowing disabled people to make their own decisions. Simple yet effective! What the shining knight needs to explain very clearly and articulately is what this means for (the newly beheld) ‘consumers’ of the land and indeed the merchants too.

Firstly there are responsibilities and rules as a consumer. Despite the benefits of entering the land of purchasing power, in the district of empowerment, there are still dangers. When using direct payments, or being on an individual budget one essentially becomes an employer. The tools required to take this journey will be around market research, legal contracts, human resources, time management, diplomacy, tax returns and other financial skills. As more dare to take this route, these tools are vital to breeze through this neck of the woods.

Lastly for the merchants, who were established to fill gaps in the private market, they are approaching a twisting, turning, winding and unknown journey too. They used to fill a generic need in bulk and were able to rely on the rulers for regular income and finance. Moving forward they also need a new set of tools including – market research, marketing and communications, customer service and retention, adding value, new financing mechanics and the key skill is “innovation”.

If the newly appointed consumers and the established merchants can meander through this tricky course which has been carved out by the brave knight, the view will be astounding for all. The rest of the land can and should do many things to assist the journey. However it is the demand and supply of the personalisation agenda that needs to progress resulting in a happy ever after story.

Since his accident, Max has learned that, to achieve full inclusion of disabled people in society, 2 barriers need to be overcome: firstly, physical, and secondly, the barriers in peoples’ minds. This has led Max to become involved with many disability-related organisations, in an attempt to overcome real obstacles and prejudices.

Max’s fitness regime (using a reclining exercise cycle) led him to the idea of the Everything Is Possible In Life Cycle – a 714 mile-long campaign, riding a recumbent trike, from Aberdeen to London. He has been training since 2002 – most recently near his London home, on a specially adapted 3-wheeler to get used to cycling with traffic.

Max sees this as an opportunity to change how disabled people are perceived, and to begin to shift the attitudinal obstacles that he comes across daily, by communicating his positive can-do message to the public. So, he will be encouraging the public to ride a leg of the journey with him to demonstrate perception-changing in action.

Max Burt says “People with disabilities are usually perceived as having the common experience of being ‘less able’. This is perhaps the only reason why such diverse people are lumped together into one group called ’the disabled’. After all, what does a blind person have in common with a wheelchair user?

I hope that my journey, as well as highlighting the positive common experience that disabled people share in overcoming obstacles, will also celebrate the often ingenious abilities that disabled people have, and demonstrate that everything is possible. Now, I want to get this message across to as many people along my route as I can”.

Pablo was clinically diagnosed with infantile epilepsy at an early age and this has led to his severe developmental delay. He is unable to weight bear or walk without specialist equipment or assistance and because he has no speech, he communicates by making noises, eye pointing and touch.  Pablo is also prone to frequent and repeated infections due to a blood disorder.

To enable Pablo and his family to go out more and access parks and countryside, The Priority trust, working with Newlife, funded an all terrain buggy for Pablo in the summer of 2009. The buggy also provides him with the postural support and positioning he requires.

Pablo’s Mother says: “He’s happier and more content. You can see in his face and body language that he’s much more happy and confident outdoors, which he loves.”

His parents are extremely pleased with the buggy and the difference it is making for Pablo and the family. Pablo is now much less isolated. Before, with his wheelchair, he needed to be indoors or on flat surfaces. The buggy is much more manoeuvrable and allows him to interact better with his brothers, enjoy parks and be outside more. As a family, they’ve also been on holiday together and Pablo was able to join family walks in the countryside.

Pablo’s Father adds “Having the all terrain three wheeler has enabled Pablo to enjoy and be able to access places that otherwise would have been impossible…without this buggy he would have been isolated and unable to join in many of the family outings.

This buggy has allowed Pablo to have experiences and enjoyment that he would have totally missed otherwise.  We are so certain that many of these outings have brought him immense happiness

We cannot emphasize enough how much this equipment has made a difference in Pablo’s quality of life”.

In 2007 Amelia was diagnosed with Spinal Muscular Atrophy Type II. This neuromuscular condition affects people in different ways. Amelia was able to walk on her own until she was 18 months old, when her condition deteriorated and she now needs a wheelchair to move around independently.

In June 2009 Amelia was given her ‘Koala’ Permobil powered wheelchair, through the support of The Priority Trust. As soon as she received the chair, she worked out the controls and just got on with using it. She is now able to move around at home, move toys from room to room and push her doll in its pram.

Amelia goes to nursery several days each week and ‘walks’ there herself and interacts normally with her friends. Her Mum said “we were worried how she would get on at nursery, but she just went straight in and got on with it.” The riser facility allows her to sit at table height with her peers and take part in all activities. Later this year she’ll start full-time school and can’t wait! The ‘Koala’ will significantly improve her life experiences at this crucial developmental stage.

Her Mum adds “With her ‘Koala’ Amelia can play with her friends, choose where she wants to go and scare her parents by driving too quickly! The riser facility means that she can press the button at the pedestrian crossing, choose food in the supermarket and reach her toys.”

Hanna was born with Cerebral Palsy and while she has some use of her hands and arms and can feed herself she cannot mobilise unaided unless she is crawling and this she can do for short distances.

She loves her mainstream school but as she has got older it has become more difficult for her to join in and feel involved with the other non-disabled children in her class.  Hanna even told her mum that she wanted ‘to go back to class R because the children in class 1 can walk.’ To help address this, Hanna’s Mum applied to Whizz-Kidz for a specially adapted tricycle so that her daughter could get around independently and keep up with the children.

Hanna’s needs were assessed to make the required adaptations, such as supportive seating so that she could be safe when riding and foot-sandels to maintain her feet in the appropriate position when pedalling her trike as well as a push pole to guide the trike if needed.

Thanks to The Priority Trust’s generosity, Hanna’s was able to receive her trike in May 2009 and as these pictures show, it has made an enormous difference to her life and she is getting full use out of it at home and at her school.  This gives her the opportunity to exercise her legs which is beneficial for muscle tone and her general health.  Best of all, thanks to The Priority Trust, Hanna is able to enjoy the freedom of independent mobility and play and have fun with her friends.

Amy’s family approached their local wheelchair service but they were unable to provide Amy with a powered indoor/outdoor wheelchair which would meet her needs.

For Amy to live an independent and active life she needed a wheelchair that met her social, educational and clinical needs. Through the support of The Priority Trust Amy has recently received an indoor/outdoor chair with a riser function called an Otto Bock. The riser function is important because it means that Amy can to raise herself up when she wants to, have eye contact with her peers and reach things like equipment at school.

The chair is ideal for use at school where it gives Amy her independence, but it also allows her to get out and about in the village where that she lives and enjoy the nearby countryside with rough and hilly terrain

Amy’s Otto Bock has already made an enormous difference and the fantastic news is that it will hopefully continue to do so for a long-time to come as it should last for five to six years. Speaking about the difference, Amy’s parents commented:

“Amy’s Wheelchair has certainly given her a new found independence, it’s a pleasure to see her doing the things she wants to do under her own steam.”

Codie is 6-year-old is a little girl, with Cerebral Palsy, who received a buggy in March 2009 through the fantastic support of the Priority Trust.

Codie’s Mum had applied to Whizz-Kidz for a buggy so that the family could do more, go out more and enjoy the outdoors by doing things such as walking on the moors.  Codie’s present manual wheelchair was too heavy and unsuitable for many outings on grass or uneven terrain.  Speaking about what it was like before receiving the buggy, Codie’s Mum said:

“Getting Codie in and out of the car more than once a day is a nightmare!”

Gina, the Whizz-Kidz therapist, met Codie and her Mum and recommended a make of buggy called a ‘Kangoo’.  This is three-wheeled buggy which is lightweight, durable and built to handle many different types of surfaces and uneven ground.  The buggy also supports Codie’s posture properly (very important for Codie who needs total support).  Thanks to the amazing help of the Priority Trust, Whizz-Kidz was able to handover this life changing piece of equipment in mid-March 2009.

Speaking of the difference that the buggy has made Codie’s Mum said:

“It has made a huge difference to our lives as family, and if you could pass our thanks on we would really appreciate it.”

These fantastic pictures show Codie in her Kangoo buggy attending an outdoor’s football party. As Codie’s Mum said:

“This family outing would have been really difficult to attend in her normal chair.”

My grandpa, absolute legend with technology, dug out these 3 newspaper cuttings at my request from many moons ago to enable me to write this blog (http://www.flickr.com/photos/martyn_sibley/sets/72157622856332857/). He is a legend as not many people of his age, let alone full-stop, could scan, save, upload and email this so perfectly. Thanks Gramps J

I’ll start with the picture of me in my new wheelchair pushing the football up the alley-way beside our old bungalow. This came off the back of everyone in my village and further afield hearing that I needed a new wheelchair costing £3,000 of which my parents didn’t happen to have lying around. I think this shows the fact that someone like myself requires more support than someone not disabled. Had I not had so many good friends and family I may never have got that chair and the confidence to get out and do it! It also shows how appreciative we were as a family to say thanks. I can remember being embarrassed at going in the newspaper and highlighting my disability. It was a necessary means. The same occurred when I needed funds towards my first adapted car which we achieved with many fundraising events.

I hope in this newer age that the government sees the longer term returns from investments in such capital equipment for disabled people. I have no doubt this, along with other support from the state and friends enabled me to be so included and able to complete my education, leading to employment. I urge policies to recognise this and for innovative solutions to arise in filling this void, not everyone has the networks seen in this article but with a small investment large untapped potential can be found. It’s a win win!

The second 2 articles, despite slightly blowing my own trumpet, show why I think people were happy to go to lengths to support me. These articles show when I swam for the British Heart Foundation (www.bhf.org.uk) – not so easy as I only swam with my arms. I raised good sponsorship money, had the then Prime Ministers wife Norma Major help me out the pool on regional TV and I won the cup for best achievement in the years fundraising. This was not a publicity stunt to raise the money mentioned previously but my wanting to do something for someone else and show just because I take sometimes, I can give to. I remember it took bloody ages to do the swim but was a big personal achievement. I hope in a different way some of my blogs will make a difference, large or small, to other people. I have also done some fun videos on www.martynsibley.com to keep things light hearted!

Overall this trait is less about social investment but personal goals. I cannot decide government policies but I can live my life in a way I think is right. By passing on knowledge and experience I take satisfaction while I hope it does encourage others to do what is in their heart. All too often disability can be a negative viewpoint on the cannots. This is counterproductive and how ever many barriers someone faces, complaining will not help. So as mentioned before, go for your goals but also give back to others as well. It feels good and karma may throw you a curve ball too.

As the Dalia Lama said “It is very important to generate a good attitude, a good heart, as much as possible. From this, happiness in both the short term and the long term for both yourself and others will come.” (www.dalailama.com).