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!

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.”

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.”

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…

When I explain why, they then ask why others are not doing more. Here, I want to explain this ‘issue’ for anyone else who just hasn’t had the bigger picture explained to them.

For me, I didn’t really see an ‘issue’ either when growing up. Sure I worried about leaving my primary school mates to go to the only accessible secondary school 20 miles away. Sure my wheelchair broke down and it distressed me being stuck. Sure I worried if girls would accept my disability in relationships. But the point is, it was my life, not a ‘disability issue’.

Going to university and then moving into my London flat with a full time job created many complications, but it was delivering a training session at Scope – (http://www.scope.org.uk) that changed my thoughts:

1)  I realised others may have had less family support, less inclusion with friends and less financial security than maybe I had in my upbringing.

2)  Also the problems I encountered were not fair. Even though I have overcome them, many of them are just unnecessary in a developed country like the UK.

Having accepted there are bigger issues and harnessing this with my studies in economics, marketing and politics, things begin to click –

I have an impairment called Spinal Muscular Atrophy (SMA) – (http://www.jtsma.org.uk gives info on SMA and I am a trustee of this charity). In essence SMA means my brain sends messages but the damaged cell at the top of my spine blocks them getting to the muscles. This is purely genetic and has no cure. Therefore I have full feeling but weak muscles from limited stimulation and development.

Disability is not about tokenism, sympathy or helping. The social model explains this perfectly. Despite having SMA I am not disabled by this. If there are steps into a building I am disabled, however if there is a ramp or lift I am not disabled. The same with attitudes, if someone assumes I am less intelligent or cannot talk I am disabled, however if they meet me on merit I am not disabled.

So what is the issue? 1 in 3 disabled people have not been able to access public services due to physical or attitudinal barriers. Disabled people are also less likely to gain employment resulting from; lesser qualifications with access to schools, lesser social skills from social inclusion and discrimination from employers. The Disability Discrimination Act (DDA, 1995;2005) should stop this, but with the legal costs liable to the individual very few cases have been brought to court and hence standards are still low without a real threat to those who breach it (http://www.leeds.ac.uk/disability-studies explains more academically many disability issues).

I maintain a balance on the social model. It is very liberating to see the problem coming from elsewhere but in getting angry and assuming society will now change leads to frustration. Society does need more access and people do need to consider disability more consciously, but as a uniform movement. It will take time, and money is a consideration but it’s about society even knowing there is an issue first.

The reason others do not see this as a problem comes from history (I will have a guest blog on the history of disability activism next month). Briefly it is safe to say many moons ago I could not have gone to uni, travelled to Australia and lived independently (earning and choosing how to live from support of PA’s) in London. Therefore disability is inherently invisible. Care homes in rural mansions and so on meant disabled people were just not seen.

This does not mean all disabled people have fewer qualifications and do not work. Hopefully I’m a testament to that. What I’d like to say here is that my experience is that whinging would’ve got me nowhere. The drive from my parents and love from friends has made me aspire to grab my dreams.

My final comment is on the cost of disabled people. Yes my care costs money, but it would also cost in a care home in the countryside. In enabling me to live as I choose and go to work, I am paying taxes and contributing to the economy. This is one of many examples when short term investment in disability leads to long term gain for everyone.

So the answers lie here:

1)   People need to be told about the problems faced by disabled people

2)   Human nature will undoubtedly result with compassion to improve things

3)   Disabled people also need to be motivated to get out there and achieve for themselves

4)  With efficient economic and political policies; buildings can have access, peoples attitudes will change and employment will be on an even playing field – at no detriment to the economy or individual people

5)   The DDA being more enforceable would be policy number 1!

I searched the internet to see if I could find any views or thoughts about particular wheelchairs, but only ended up finding a scattering of blog / message board postings and a handful of sites with some generic comments on particular individual wheelchairs.

I found this quite surprising, since it is possible to find detailed user reviews for nearly every product imaginable, but yet could not find anything particularly substantive or informative for a mobility item as important as a wheelchair.

Therefore, without any previous knowledge of website design, and with the assistance of an excellent beginner’s book on website design, I created a simple site called www.abilient.com which allows users to post reviews of their wheelchairs.

A review can be anonymously posted by downloading the questionnaire by clicking here; and returning it to info@abilient.com.

In time, I hope the site can become a useful, in-depth and informative guide for anybody interested in buying a wheelchair. I would also like the site to be a helpful source of information as to the quality of service that various companies provide to their customers. This will hopefully highlight instances of shoddy customer service, but also, and equally as important, give credit to companies where due, who provide excellent service.

Unfortunately, the site is still at an early stage, and is not as of yet compliant with accessibility standards. I will try to improve the site where and when I can with my rather rudimentary knowledge of website design!

Any feedback (either positive or negative) would be greatly appreciated!

Srin

In September 2008, when the Occupational Therapist from Dragonmobility first met Keira at the request of Keira’s OT, she was shy, withdrawn and clinging. She had undergone a lot of medical interventions in her short life, and at the age of 2 had a natural tendency to cry and ask for cuddles when presented with anything new.

Keira has an undiagnosed neuromuscular condition which causes severe weakness, particularly in her lower body, and has caused dislocation of hips and knees. Her parents spent a lot of time carrying her around, and as she approached her third birthday and was beginning to grow fast, this was becoming increasingly difficult.

Despite her problems, her parents and OT knew that she would be capable of taking more control of her life, given the right tools. Priority together with a number of charities and the local wheelchair service, clubbed together to raise the £18,000 needed to provide the family with a SnapDragon powerchair with customised seating and five years technical support.

Because Keira’s need will change as she grows, Dragonmobility will provide whatever revisions to seating and service for the powerbase are necessary to maintain the personal mobility she becomes accustomed to and relies on.

Priority, with generous support from the Presidents Club was able to donate the final £6,000 necessary to get Keira the chair, and on 18^th March 2009, Keira visited the Dragonmobility workshop in Cambridge to collect her very own pink SnapDragon.

Keira had begun to realise a little of what the SnapDragon could do for her, but was still nervous, and still used to asking one of her parents to carry her, instead of making her own way. Her parents were also beginning to realise what kind of challenge having a 3year old in a powerchair, with all the issue of safety and discipline would bring.

A visit to Keira’s home only four weeks later, showed a total transformation. She was out in the garden, dashing about on the grass. She was moving so naturally in her SnapDragon that it seemed like an extension of her. When Mark, her father, offered a cup of tea, and went into the house, she was quite happy to stay and entertain on her own. She played like any three year old, and when her father came back out, she played with him in and out of the spaces under her sister’s trampoline, and took us to meet their neighbour.

The neighbour said she was a different child since getting the chair; talking and playing and mixing like any other child, instead of being the shy, trapped little soul she once was.

Mark reported that it only took Keira a week to become used to her SnapDragon. She had great fun with her friends having an Easter-egg hunt on Easter Monday, whereas before she would have been sitting on the sidelines.

And when she starts school in the village with all her able-bodied friends she will be equipped to learn and grow and develop her abilities and potential without being limited by passivity and lack of confidence. The one thing Keira has now is plenty of confidence!

Having travelled to the Canary Islands many times before this wasn’t a difficult journey in terms of disability related. However there are a couple of things I’d like to touch on.

Firstly the reason I have been so many time to these islands (beyond more guaranteed sunshine) actually is wheelchair related. Whenever in the past I have looked for a new destination, a new adventure etc the hassle is unbelievable. For those who haven’t travelled with a wheelchair I can tell you the house to airport trip is usually fine with your general transportation method refined over the years living in the UK. Even the airport part is much better once you know your needs and can communicate them firmly and politely. This means I check in, introduce myself to the disability desk and tell them I will meet them for boarding to be carried on the plane, and they can only then have my wheelchair for the hold. It’s the transfer abroad, hotel accessibility, hoist and showerchair hire and general infrastructure on the resort where it gets complicated. Its only once you have been somewhere that you refine this aspect from experience. Hence after a while the simple tried and tested becomes the desirable, even as an adventurous exploring type person. Don’t get me wrong I have done America and Australia which all went smoothly all things considered. Now working full time I just need a holiday to relax and do not have the time to plan such trips. Maybe in a couple more years I’ll go for it again.

The second aspect is around cost. Although I know in Lanzarote I can get wheelchair accessible transfers and hire medical equipment this is not cheap. Being on an average wage and doing average things in my average week, I have to budget and save for holidays like everyone else. So when the transfer costs £150 and the hoist and showechair £100, £250 of my earning goes on things over and above accommodation, flights and important drinking funds. Its something you learn to live with and I am definitely not normally a complainer but anyone with a sense of logic can see this is somewhat unfair in trying to live a ‘normal/typical’ life.

I would like to finish with how this was a great holiday. I managed to de-stress from work, think about a few things about where I am heading post moving to London (local council being something new and exciting) and caught up with my family. We had great days on the beach, lovely meals in the evening and drinks with karaoke later on. Lanzarote will suit me fine for now until my yearning for disability skiing or diving takes a stronger hold along with a boost of crazyness…

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.