The afternoon was spent with Srin and the Vikster on the Southbank. The Thames festival was in full swing, the sun was out and we managed to chill out while catching up. It came to me how interesting the dynamics of being disabled is, the friends you have (disabled and not) as well as the bigger picture of the disabled community. For me personally I did not have so many disabled friends until I was around 11. I believe I have mentioned already I benefited from seeing I was not the only person in the world the way I was. Then at uni I lived with other disabled people and met one of my best mates in the world – Grimsby Rich. We get on in so many ways and part of it undoubtedly is having an empathy some of my other mates just could not. Rich and I are also great mates without our disabilities, as we just click.

Kicking it with Srin and Vik opened up some thoughts around disability, how we approach this and some of our personality traits. Us 3 all have SMA and so in theory are very similar. Sure, physically there are similarities but we have different personalities, jobs, sense of humour and even views on our SMA. The following part of the blog is not of our conversation but some thoughts and observations I have had since. Really our chat was quite brief and mainly how we approach care. We then moved onto eating our Nandos, but it planted the seed of thought that has grown into this blog.

Its actually obvious to say disabled people will have different occupations, interests, personalities etc. Another point that is obvious (but fair to mention alongside this) is how different impairments make disability a very varied thing. Someone in a wheelchair to being deaf, dyslexic, having ME and so forth will have massive differences in the effects to them as a person. The point of where all this grabbed my thoughts is around solutions to disability or indeed government decisions around social care and benefits. Clearly generalisations have to be made, but when people have ‘normal’ but varied traits (loud, quiet, shy, outgoing, thoughtful, practical, etc)  - a one size fits all approach is hard. Support for a wheelchair user being a builder is a different matter to a dyslexic teacher, yet both should be possible. Furthermore someone who is blind needs a totally different care package and financial support to someone with ME.

Clearly my area of experience and ‘strength’ is from a wheelchair users perspective. Having ‘generalised’ in some of my blogs I was right to learn of other impairments and know my blogging limitations on disability. However I do feel sometimes the disabled community can accidentally knock the points a person makes on a specific impairment, to enhance the profile of another part of the community. For me, to enable the government and other key decision makers to make the right solutions, the disabled community has to find its own common ground.

In acknowledging different impairments, acknowledging different perspectives, observations, viewpoints, opinions, approaches and other human traits would be a good start. Then to find the overarching objectives and similarities is the next step. There would be no need for shouting to represent a particular impairment, no need to push the agenda of a shy disabled person over an extravert, or indeed advocating for a ‘poorer’ fraction of the community over a ‘wealthier’ part (to generalise). This answer would allow for all impairments, all personalities, incomes and types of lifestyles to live fully. Only then will the government be hearing one loud, inescapable lobbying power. Until then I worry the smaller voices representing different parts of a massively disparate group of people will counter act itself rather than achieve the overall point – the right policies for each and every disabled individual!

I do not know of this overarching solution and stress these are just my personal thoughts over the past months. I would love to hear if you as a reader think this approach is flawed, could be tweaked more or you agree with its sentiments. The gold at the end of the rainbow is not coming tomorrow, but I believe to consider the disabled community in this way enables a more holistic way of reaching it sooner.

Thats enough heavy stuff for Monday night! Off to watch the Inbetweeners now

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.

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!

I will be using this blog to share some of my experiences of major transitional periods of my life, which are faced by many, but involve unique challenges faced by those with disabilities.  The first such period for me involves moving from home to live at university.

I started making preparations for moving to uni back in the summer of 2002, more than a year before starting a course, and before even receiving any offers! Moving to uni essentially brought up two key areas of difficulty:

1.       Finding a uni that is accessible or getting that uni to make building adaptations

2.       Independent living

An accessible uni…

Before making applications I toured various universities for their suitability in terms of accessibility and general character. Some were more accessible than others, and some were more willing than others to make adaptations. I ended up accepting an offer from i.e. Kings College London (KCL), who were very accommodating and willing to make any changes that were needed. This included building an accessible room at my halls of residence, and fitting automatic doors in various locations. An additional room adjacent to mine was provided for a support worker.

While sorting out accessibility issues, I was arranging with KCL and my LEA the support I would need while at college. This included help with taking notes during lectures, and help with various tasks while doing practicals in the labs. Funding for these arrangements came from the Disabled Students Allowance (DSA) provided by my local LEA. In order to receive the DSA, an assessment was required at a specialist centre in Central London. Apart from confirming that I needed support, the assessment centre serves to allow you to try out assistive technologies such as voice recognition software. If such equipment is useful, the assessor will ensure that the DSA is used to fund its purchase. During this time, I also made the decision that any educational support needed like notetakers etc, would be kept separate from the personal care which I needed. This ensured that the most suitable people could be appointed to such roles. By this, I mean that an individual, who is taking notes during a lecture or seminar, may not be suitable to help with personal care.

Nonetheless, by virtue of starting the process early various issues of difficulty could be identified and sorted well in advance. Moreover, my accessible room and the support that I needed while at college was already organised by the time term started.

Independent living…

Arranging personal care is probably the most daunting challenge faced when moving out. If you are unfamiliar with having strangers provide your personal care, this can be something which takes some getting used to. To further complicate matters, depending on your care needs, it may be necessary for your funding package to come from more than one source, which may require additional assessment and form filling!

As is probably still the case now, back in 2002, my social worker was the main point of contact in putting together the care package. Various assessments from a variety of professionals were needed in order to assist the social worker in determining the level of support needed. Even though these professionals may come to conclusions that may be completely obvious to you, unfortunately such formalities are required.  In my experience, it was very important to be as honest and open as possible about the help needed. Requesting the personal support that forms the care package often works on the principal of “if you don’t ask, you won’t get”. It is important to prevent yourself from being in position where you have to ask social services to increase funding and the care package on an emergency basis while in the middle of a university semester.

After social services and the ILF agreed to fund a 24/7 care package, I also made the important decision to receive funding through the Direct Payments system. Direct Payments is a scheme where money is forwarded to a personal bank account, for which you account to social services at the end of every year. This system allows you to organise your own support and who you would like to employ. Direct Payments can be challenge to manage, and it is vital to make sure your social worker provides you with all the facts to help you make your decision.

Before starting uni, I chose to employ support directly by advertising, rather than through an agency. I held an application and interview process and initially decided to employ a single person, who started two weeks before term began. Social services also put me in touch with local advice centres and a payroll agency to help me understand my duties as an employer and to assist me with the required admin that arises when you are an employer.

How you decide to choose your support workers and whether you organise your support through Direct Payments is a personal decision, which is influenced by a multitude of factors. It is best made in consultation with your social worker who is there to help you, and those in your life who you rely upon.

Six years on, managing and administering personal care needs is still a challenge, but rewarding nonetheless. Even after six years, it is a continuous and ongoing learning experience. The entire process can be quite laborious and time-consuming, but in the end, the reward of having an easier life at uni where many of the above problems are dealt with before starting makes it all worthwhile.