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.”

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.”

The broader area I want to discuss is easier with the back story. Those who have read my blogs and know me personally will know 98% of the time I enjoy working full time at Scope, meet a friend or two of a week evening, like a dance in a club at a weekend as well as watching Tottenham and taking in the odd music concert and then of course travelling when I can. So understandably I am feeling frustrated at being stuck in.

I am even more annoyed as this goes back to 26^th October with my infamous sleep study. I left the study with the ok and come back in a year comment, but with antibiotics due to a slight chest infection. I was then off work for 2 weeks which is the longest time I have ever had off in my working life but a must in the situation. I have explained before how for me a normal cold goes on my chest, my cough is weaker due to the SMA and the mucus sits there and becomes infected. Having recovered and gone back to work for 2 weeks I caught a second cold and last Wednesday it went south. So I am on yet more antibiotics and struggling to shift this time.

I remain confident it will be ok but as always I have been thinking deeper on this and want to share the following. Nearly 5 years ago I had the usual scenario but it was the worst I have known and turned into pneumonia. It was the first time I was aware of my mortality and not to overdramatise – I was scared and it was touch and go. On returning to uni afterwards I had news one of my best friends who had SMA passed away from pneumonia. We were both in Coventry living in next door flats and had also attended the same school on the same bus. It knocked me sideways for multiple layered reasons. Big shout out to Paul!

I have come to the realisation that I am right to do all the things I do and grab life, but this bad early start to winter has shown me that I (as with everyone) must know my limits. Rather than stress about missing work (which I have been) and be totally frustrated I am stuck in not doing the things I love, I know I have to accept my impairment is limiting me right now. In doing so I hope it will enable me to get better quicker.

I know from talking to other disabled people there is such a will to be ‘normal’ but sometimes to the detriment of yourself. I feel the point of this blog is to say to disabled people that do not dwell on your impairment, get out there and do it but when it takes a hold and limits you listen to your body and take the steps necessary to get back to full fitness.

I met with Andy of Andy’s Kars at his garage in Bar Hill on Saturday. He has been working on my vans adaptations in the positive sense through the past weeks of trauma. Not only has he sorted my car after the ongoing problems he is an amazing guy generally. While he runs a garage he also does a lot more. In working with disadvantaged kids he helps them to take responsibility for overcoming their ‘challenges’ as he calls them. While it was amazing to meet Andy and see the great work he does in training these kids to become mechanics, and improve so much more themselves, he said one broader thing around the inspirational talks he gives that has resonated so much I want to blog on this subject. I also met with a director of a disability charity called HAFAD last night who made very similar comments around this. More to come on Kamran and his work soon.

In chatting around my aspirations during a general catch up they both struck on somewhat of a contradiction I and many other disabled people have. Personally I see myself as an outgoing, confident person. I love socialising with good people and have aspirations to one day manage a team of like minded people towards a common goal that will leave a small legacy when I’m gone. Sounds a bit cliché but I want to harness business with disability for a better outcome for all involved. Details are hazy at present but I am thinking all the while what this may actually play out as.

The contradiction is I am not always confident in my ability to achieve something significant and doubt not only myself but how others see me. I have discussed the journey I take people on from meeting and them losing stereotypes, but I think professionally or aspirationally it’s another matter. Having gone to uni, travelled and living independently I sometimes feel that my ambition is too much, or not necessary, and I should stick to being content where I am. It clearly is a balance to strike, but overall it is a contradiction. Would a non-disabled person at 26 with a Masters degree reduce their hopes and dreams so starkly? No, because they can progress with less barriers, but it’s also expected and the norm to move on.

I’ve realised now that while the social model is so important – society needs to make the physical environment accessible and have more open attitudes – there is a lot of need for disabled people to be strong in themselves. “Social conditioning” is when you behave the way that people expect you to. It’s all too easy to fall into this trap. Every disabled person needs to know themselves, their limits and challenges but also to aim high. Everyone can achieve what they set out to; it just takes some planning, patience and time.

For me having felt like such a small fish in a big pond in London, feeling vulnerable with contentious care decisions and other worries I have decided to wipe a clean slate. I’m not going to move at the speed of light but I am going to think on with my dreams in a manageable/attainable way. I am going to be that confident, sociable ambitious person I know I am and enjoy the ride, not question myself as much as I readily have of late.

What I do want to do is an overarching blog on transport bouncing off of an interesting book I’m reading. Its by Ben Elton and called Gridlocked and was recommended by my aunty Diane and her boyfriend Dave at Sibfest. Very quickly Sibfest was the name given by work colleagues to the family gathering I attended Saturday. Beyond this my weekend was minimal due to feeling under par. Diane and Dave have ME and a guest blog on the subject is coming soon.

So without ruining or spoiling the book, it is a thriller about the head of a motor company wanting to kill an inventor for their new invention that could kill the entire road industry. The twist is the inventor has cerebral palsy and the reason for the invention is to win the love of a girl who was put in a wheelchair due to a car hitting her. The invention will allow her to be more mobile.

The point is while the book is well written, with a great plot and hilariously funny, it also explains disability so well. For example the way taht getting a wheelchair on a bus results in people staring the way you do at a person holding you up at the supermarket checkout while they write a cheque (the same as when I am carried on to planes too). Also how taxis are just hit and miss if they stop, but then the tube!

He looks at this as a parallel to apartheid in South Africa, which sounds way OTT. However when you see that a citizen of the UK cannot access the main form of transport in the capital city it is incredulous. Realism says that there’s money and physical limitations to changing the Victorian underground. Flip side is even if it takes 100 years we should seek to practically stop this basic form of segregation.

Outlining these issue here does not show the humour and vigour of the book. Please do read it! It does show how my car breaking stresses me much more. It is my lower stressed route to everywhere. Any other transport thoughts, please do share…

The financial assessment and adapting of the car was smooth, unlike 6 years ago when getting my first van. Historically the paperwork and preparation was so time draining it put people off even looking. If you want info on the assessment stage and learning to drive please email me.

The problems started after I collected the vehicle around 2 months ago. Since then I have had to take the car to the garage 3 times, twice it was towed for the same fault and the most recent time took over 3 weeks to mend it.

The effect is not being able to get in the tow truck and being stranded at the breakdown location, while the breakdown company take the car away. Once home I am stuck in London as the train station near my parents is too far and there is no way to go from the station to their home. In London I have to go everywhere with my PA’s unlike when driving my car alone. Many buses refuse access especially in rush hour, which is when I’m going to work due to “no room for the wheelchair”, “ramp doesn’t work” or “wait for the next one, there’s a pram on”. In arriving late to work and stressed, I have had to keep chasing the garage and Motability to see what progress has been made with my car.

I decided yesterday that the process and system could be improved. The breakdown company, Motability and the garage either pass the buck or more likely do believe it’s simply not their responsibility with each scenario.

From my point it can’t be assumed I can keep spending my working day arranging all of this and driving back and forth to the garage every other week. Also I have paid for a car, as well as forgone monthly income for it, yet I have barely used it. As a customer/purchaser this can’t be right.

It comes back to intervention. Without the government run Motability scheme I could not afford to drive. This is not a private market. In the realms of that the breakdown company need their cut for towing, they still should be more aware that if a customer can’t get in the tow truck on a Sunday they can help out beyond the “policy guidelines” to help that person home. The garage needs to be paid for their knowledge, time and technology, which they are. But once they’ve adapted the vehicle for larger sums of money, their after sales service should be just as apt as if there were many other places vying for my business. Unfortunately this is a seller’s market with little enforcement of standards due to fact the government will pay for the work regardless, but no accountability from delayed times and inefficiencies on the customers are considered. A market based on social values – disabled people driving and being independent – does not have the social business model that should be demanded.

Without intervention the demand for certain products is too small to stimulate the supply. So if the ideal market generally is a government stimulated one, they need to ensure a contract is won on strict terms of before and after sales service. Maybe the customer should be contacted to discuss their experience of the process to review this. However until alternative adaptation specialists are in abundance it feels like one is metaphorically over a barrel with no alternative. If you buy food at a restaurant you don’t like, you go somewhere else right?

I have given these thoughts to Motability and I hope they will enforce these improvements in the process for me and for others. I will keep you posted on the response in up to 5 working days.