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…

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!

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.