Having read the article written by Patrick Moeschen I was inspired to contribute to the social model discussion and how this perspective also enhanced my story. My name is Martyn Sibley, I have type 2 Spinal Muscular Atrophy (SMA), I live in London and I am now 26 years old. Like Patrick, my upbringing was ‘normal’ and very much a can-do approach. Having used a wheelchair since 3 years old, requiring support for transferring from my bed to the chair etc, assistance with personal care, cooking, turning at night and other daily chores this is not always an easy scenario. I went to mainstream school, enjoyed family holidays with my mum, dad and sister (who is unaffected), socialised with friends and overall enjoyed a great childhood.

Fast forward on and I managed to gain good school and college results. Having been so integrated and encouraged at school is the reason the following was possible. Firstly I got into university and took my first steps (so to speak) towards independent living. With a team of 4 carers in a city called Coventry (in the midlands, UK) my life took a massive leap. I met many amazing people from around the world, broadened my horizons and learnt the art of drinking while staying up very late. I met many beautiful girls and enjoyed 2 long term relationships. Furthermore I gained a 2:1 in Economics followed by a Masters degree in Marketing. I managed to learn to drive in these years and took a trip of a lifetime to Australia via Singapore which was extraordinary.

Having laid these foundations for myself I left university, worked for one year at a national disability charity called Scope from my little home town, before realising I needed more. I managed to secure a similar job but in their headquarters in London. The plans took shape and not before long I was moving into my 2 bedroom flat, with a personally employed team of carers and the world at my fingertips. Soon after I received promotion into the fundraising team. This allowed me to use my degree subjects in a job that was so worthy and supportive of disabled people. Prior to this I had dreamed of London but with the dog-eat-dog lifestyle of the ‘City’, money and pressure. I soon realised I needed job fulfilment, not just the big pay cheque and I realised my body wouldn’t sustain such hours long term.

Around this point I was introduced to the social model of disability by Scope. It has been liberating to not see my disability as the problem, but instead a blip in the structure of society. By seeing 3 types of barriers; physical, attitudinal and organisational things fall into place. When a building has steps I am disabled, when there are ramps I am not. When people assume I am less intelligent because I use a wheelchair I am disabled, when they get to know me I am not. When employers assume my physical limitations mean I cannot work I am disabled, when they choose the best person for the job I am not.

I then carried out some talks to the youth group of the Jennifer Trust for Spinal Muscular Atrophy (JTSMA – charity for people with my disability). The buzz I got from lighting a fire in these kids showing despite their disability anything and everything was possible – I was living proof. I decided I wanted to do this to a larger audience and setup a blog. This was when www.martynsibley.com was born! Through daily updates on my activities and more political articles, the use of photos, videos, Twitter and Facebook I now reach nearly 1000 people. Some are disabled looking for inspiration, information or just someone to relate to. Others are not disabled and hopefully having their attitude of disability realigned with reality, or possibly to just look at the crazy life I lead.

Recently I have delivered workshops on practical tips and advice on disability, flown a plane, recorded a song and agreed to appear in the fashion show www.disabledandsexy.co.uk for the JTSMA. The sky really is the limit as long as I am working, sharing my experiences and always smiling. Whatever happens I believe the world for disabled people has sunnier days ahead.

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.

Firstly Rudolph had a visible impairment yet ironically it did not effect his day to day life physically. Infrastructure was not a barrier for Rudy as he had full mobility. So social barrier 1 physical environment was ok. However he had some big problems with the attitudinal barriers faced by many wheely and more hidden impairments. After all the other reindeers would laugh and call him names, to quote. I imagine he would get rather annoyed by this insensitive reindeer humour. However social barrier number 3 (2 being attitudinal) is the organisational barriers. Now Im in 2 minds here on this one. On the one hand, Santa may have had disability awareness training, knew Rudy was the best reindeer for the job on that cold and foggy christmas eve it was right to promote the red nosed wonder. On the other hand was it just that it made sense this night to use Rudy but actually he would join in with the other reindeers generally mocking. We have no real proof on this either way but regardless I’d like to think once Rudy proved himself there was no need for organisational policy changes or awareness training as they would just see through that big red nose and embrace him as a reindeer. The big issue for me is a red nose classified disabled under the DDA, any thoughts?

So I hope you like my take on this. As you can tell I’m feeling much chirpier. I went back to work Thursday and it was a slog still full of cold. I made it and after a visit to my beloved south bank yesterday for hot chocolate with Beata (on her second shift) I think the colds shifting in time for xmas. today Im roasting my dinner and then Nicola is coming over for some tv and a catch up.

I will be doing Martyn’s review of the year vlog on Tuesday or Wednesday (probably only on www.martynsibley.com, but will see if it can be on priority site too) so keep an eye out for that and in the meantime stay safe kids!

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).

So I headed towards the M11 with radio and heater on. 10 minutes later I realised I was cold and my hands were going into that weak claw they do in winter. With the new car, the accelerator is a little tougher but also I can’t reach the heat. So I started to struggle to get above 20 mph going onto the motorway. People were flashing and beeping and I started to crap it.

1 hr left and nothing looked optimistic. So I pulled in on the hard shoulder to calm and think. I tried to set off and now 10mph is hard. Back to the hard shoulder I call mum. We decided I can’t risk it and called 999. The traffic officers arrived while mum, Dave, Robbie and Jamie head to meet me.

The officers were great – we fired the heater, I moved to the next junction and pulled into McDonald’s car park where they bought me a tea. I spoke with Alessandria who put a good positive spin on things. Then the cavalry arrived. Jamie said if I wanted a family reunion there are easier ways.  So with mum I managed to drive back for sky plus Gavin and Stacey.

Then this morning I headed for the dreaded hospital review. I had blood tests, x-rays, stethoscopes, nutritionists and physio. As mentioned I hadn’t had physio in a while and am scared of the physio terrorists. However this time she was very attractive and funny and alleviated the pain somewhat. So I have been discharged, told to rest for another week with new medicine, go back for more physio and monitor it. I would rather have had “u r fine now” but this is probably the best news. At least it’s not terrible news but I do need to kick this 100% before getting back to normality.

Thanks for the get well messages guys. The Xmas period better watch out providing I’m back…

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…

Reading about Fiona and her family’s isolation and exclusion from society got me thinking more on the subject of inclusivity. I think I have always been quite outspoken that my upbringing was more inclusive. However there have been, still are and always will be times when I feel this sense of difference. For me they have often come with change. Starting primary and secondary school, university and moving to London were all massive changes with things to consider that most would never imagine – access, personal care and of course new people.

I can chart the changes of attitude in a person I meet, from assuming I may not have any sense or speech, being patronising, to apprehension of what to say in not offending me and finally “I don’t see you as disabled”! It’s a necessary must to walk people through this but a tad tedious sometimes, especially when it’s a more superficial meeting in say a club and there is not the time for such a journey.

Once the change has occurred and things settled down I gain more confidence knowing my surroundings. I am then more apt at grabbing life and pushing onwards to achieve in all senses compared to non-disabled people too. It’s about understanding yourself, understanding others and being positive and pragmatic to remove the barriers placed in your way.

The real problem of exclusion is when you have limited access, limited/no personal care and are unable to meet and bond with new people always. Despite every effort to integrate and achieve with the most sociable, intelligent being – it is simply impossible. Take a very close friend of mine. Since moving into a new city it took them months to get a flat, they are still not receiving enough care and hence have less chances to be out and about and embrace what should be a new time after uni, meeting many new friends and having new experiences. The knock on effect is periods of depression and questioning things that were once obvious. The horror of this from a social care perspective is the “savings” made, are lost in other ways with reduced physical health levels and mental health implications.

The result of what I am saying here is social exclusion can be overcome by a long term strategy. Instead of cutting costs on access and personal care in the short term, we are losing more through physical and mental health care costs, have a loss of economic input and tax revenue, while overall happiness and welfare plummets. The answer is to provide these basic factors so people can flourish into who they want to be. Society benefits as a whole and the public will see disabled people more included and easier to chat with in an instant, like they would with anyone and everybody else.

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.