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.

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.

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.