Independent Living

Yesterday I was invited to help out Alex Flynn doing some PR work, something I have never done before and have no knowledge of doing, especially as the work would have meant that I would have been dealing with the American media, I’m not a great media person if you know what I mean. I am the type of person, that if Usain Bolt sat down beside me I wouldn’t recognise him, which has been totally proved as it happened, not Usain Bolt but with some other rather famous people in Glasgow. I know nothing about celebs or media companies, I haven’t read a magazine since 2003, and that was because I was in hospital for 2 weeks, a British news paper hasn’t been in my hands since 1997 and I haven’t got a clue about what is good or bad PR these days. I just simply not the person to do this job at all, understandably I turned the offer down as I don’t want to damage the wonderful work Alex is doing. For those who haven’t heard of him, Alex has early onset Parkinson, he has been fund raising for Parkinson research for a long time, his latest challenge is to run across America, ’10 million meters’. The run is due to start in September and the PR person set up to do the work, have pulled out last minute, he is even willing it’s not huge money but it could be an added earning for some one who already does this type of work freelance. If you know anyone or even would be interested in helping yourself, let me have your details and I would be happy to pass them on.

While I was thinking about all of the above I also had to take into account the money aspect. One of the really difficult things about working in the UK once you are signed off as permanently disabled is you can’t work at all, well you can up to 16hrs a week voluntary work but any payment at all can mean they take your benefits away and you have to start from the beginning again. It means that it really isn’t worth your while taking any temp work not only would you loose your benefits for that period, but it would mean that you would also loose a further £15 a week for the next 3 months, then loads and loads of forms to fill in just making it all more hassle than it could possibly be worth. On one hand they don’t want you to be on benefits but on the other they put in so many hurdles and barriers it becomes impossible to do anything other than stay where you are collecting the monthly checks.

Feeling useful and achieving things is so important to anyone who has a chronic illness and or is housebound. I have many times said the biggest enemy I have after health is that feeling of self worth. The desire and goals, achievement and success don’t go away when you are no longer able to get past your front door and to be able to be part of the working world even for a short time is worth far more than what the NHS can do with just tablets. I really think there should be more flexibility in the system, allowing you to work if the opportunity arises.

Years ago I was unemployed as I tried to establish a career as a DJ, the government allowed me to work, but I had to declare all I earned and supply receipts for what I was spending on equipment, taxis and so on. They assessed what I had earned and the amount I got in benefits changed weekly depending on what came in. They system once ill is totally different, you are either ill or not, there is no support to allow you to try and set up a self employed position, it is just nuts. I am sure there are many opportunities especially these days, which would allow a degree of self respect to be obtained without the complete removal of benefits until it is clear that earnings would be able to replace totally what was previously claimed in benefits.

I really do believe that if there was a system available more people would take hold of that possibility and more would then be able to become independent from the state or at least to reduced the level of benefits, while still earning a little above that rate, allowing them more self respect and a better standard of living. This is something the government wants and something others out there like me would grasp with both hands and attempt to run with it even when their bodies can’t run any more.