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.

I believe that one of the most positive ways that this blog can help, and address problems discussed in the articles by fellow bloggers, is to ensure that those who make the decisions at a political level, are fully aware of the problems faced by people with disabilities.

Therefore, I will be writing a series of articles on this blog which discuss the pressing issues raised by contributors to The Priority Trust with those who influence policy and those who make policy which has an effect on the everyday lives of disabled people.

My first article intends to bring to the attention of those who make policy in the Government’s Office of Disability, the difficulties faced with independent living and the ever increasing problems that are being faced with getting the support which is needed. Martyn Sibley has written an insightful article that really conveys some of the increasing hurdles that some disabled people are having to face through no fault of their own to get the help they need.

If there are any other things you think The Priority Trust should raise with politicians and their advisers, please comment below and together we can help make a difference.

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.

It’s tough for me to describe my move to London as ‘a disabled person, who relies on services from a local authority’, because I did not see myself as particularly disabled.

OK, I use a wheelchair to get from A to B, a hoist to go from my wheelchair to bed or shower and support workers to carry out various other tasks. ‘Not disabled?’ I hear you ask. You see, if I had the attitude ‘I am disabled and moving to London’ I would not have dared make the move, nor done half of the things in my life!

Disabled by bureaucracy

The point at which I was really disabled is glaringly obvious. It was due to a slow, impractical, bureaucratic process that put money ahead of common sense.

My crisis began when my new social services department scheduled my ‘care needs assessment’ after the date I moved home. Their report was left untouched for a further six weeks, before it went to a panel.

They approved three hours support per day. Try a further 21 hours and we’re there!

Mike Tyson in my corner

So I wrote to my MP and sent doctor’s letters and further complaints to social services. Eventually over four months after I had moved, a meeting was arranged with a new social services representative and a third party called the Independent Living Fund (ILF), who were joint-funding my ‘package’.

Fortunately the ILF representative was very much in the know on the legal and general obligations of social services and helped to get a better decision for me. They continued their own funding too!

It was like having Mike Tyson punching heavyweight disability knowledge and flooring social services!

Tough time

It was a tough four months. I was nervous and stressed. I felt low and I was questioning my ability.

Without the right support I cannot bathe, eat, do household chores or socialise. I seriously thought about quitting my job, selling my flat and moving back in with my mum. What an awful prospect after all the effort I went through to get a job and a flat in the first place. And, I do not want to go into the housing issues I faced prior to this. But, what a relief! I’d got the support I am entitled to, which allows me to work and participate fully in society.

Money protection services

My situation highlights the strenuous efforts undertaken by social services to protect their budgets. It shows that people like me need to know the assessment process inside out – a bit of a Catch 22 situation, as you have to go through it first to really understand it!

In my opinion there is a ‘social care crisis’ and the system needs to be improved. We need to continue to lobby the government to prove that direct payments and individualised budgets are important as they allow an individual the flexibility to choose where and how they live. We also have to lobby local authorities to implement a less stressful and more sensible assessment process.

Sharing knowledge

When the system fails it is crucial that an advocate is available to step in and voice the needs of a disabled person, who is often unable to express them in a way that social services demand.

I know I’m not the first person to be disabled by the process of moving home. I probably won’t be the last, but I’d like there to be a way for disabled people to transfer their knowledge of how local authorities work.

The idea behind Priority was to use Kieran Prior’s experience of pushing boundaries as the inspiration to raise funds and provide more disabled children with the right mobility equipment. We set out to build a group of supporters from the banking and business world who could help make a real change.

We were both aware of the lack of funding for the right wheelchairs that give disabled children their independence (see Why Priority). Priority evolved to provide a simple and effective way of bringing new funding to this issue and 18 months later we’ve funded equipment for 22 children.

So why the Priority Blog?

Well if Kieran’s experience is our inspiration, could it not inspire others? And if there are other young disabled people out there, living and working independently, their experiences must be equally valuable.

So the Priority Blog is about sharing the real life experiences of a group of disabled people in pushing boundaries to increase expectation and opportunities for other young disabled people.

A  group of young physically disabled people from a range of backgrounds have joined Kieran to blog about their own real experiences of growing up, school, living and working with others and everyday life.

Who is it for?

All those interested in greater independence for disabled people or with an experience of disability. Disabled young people, their family, friends, carers, assistants, teachers, colleagues, employers, Policy and Service providers…..

What makes it relevant?

Real life experiences, real life answers from real people, because peer to peer learning is stronger than offering advice and information

What will the blog achieve?

It provides real information, knowledge and feedback to and from those who need it

What difference will this make?

We hope it will increase expectations and opportunity. The chance to share and learn with peers

What makes it important now?

There is a growing population of disabled people living and working independently

Who is already doing this?

We couldn’t find anything similar. Other organisations offer advice and policy.

Do you have  an experience of disability you wan to share, or make a comment?