Independent or Supported

For many of you out there this is the first day of normality after the holiday, here in Scotland there is still one more, today, so as you might guess I have my snoring companion for one more day. I had a phone call from my friend Jake last night, at first I thought it was just to say happy New Year, but those words were rapidly followed by “So which day do the decorations have to be down by?”. He is only 7 years younger than me but at times the questions he asks makes him seem much younger. I had actually been sitting watching Eastenders when the phone rang, by the time I crossed the room to pick it up, it had shifted to answerphone, I still picked it up but I couldn’t see the number on the display screen because it had switched over. I was sure that I actually saw Teressa’s name on the screen before it vanished, so I found her number and called, she seemed a little surprised to here from me, especially as it wasn’t her that called. We spoke for a few minutes but as we had talked last week for a long chat, we wished each other a happy New Year and I returned to trying to work out who called. Our phone like almost all these days has a display, but I couldn’t get it to show what the last number was that called, I pressed all the different buttons but none gave me a number that I could be sure had been the last to phone here. Adam was in the kitchen washing some glasses, so I took it to him feeling silly as I was beaten by phone, another to add to my list of, I just can’t do. It took him less than a second to find out it was Jake and I left the kitchen as sheepish as I went in.

Tasks like that are so simple but when your brain won’t answer your questions, your eyesight fuzzes up what is there to be seen, and your fingers press a collection of buttons and not just one, what chance do you have? I hate to think what might happen if you dumped me in a lift or in front of a bank machine, I think others would quickly have enough of me and just shove me to the side. It really are those sort of everyday simple tasks that I learned long ago that it was best not to even try, the results are all clearer in my mind than the processes are. Joking a side though, it is those simple things that quickly pile in on us and make it clear you just wouldn’t be able to manage the world out there by yourself. Living isn’t just about being pain free, it is about being able to be independent in the wider world, I have often wondered where I would be now if it wasn’t for Adam, he long ago took over that side of my life, in the truest meaning of the world I haven’t been independent for years. If I was on my own, I would need so many helpers just to get through a normal week that it would be a nightmare with carers coming and with the best will in the world not doing what I really want doing in the way I want it done. It is all very well government going on about independent living, it just isn’t possible for everyone and it probably extremely dangerous for many.

I expect that most people see independence meaning the big things, but in reality independence is all the little things. The things that most people don’t even think about as they do them daily, how do you open a door when you can’t remember which way a key turns or you can’t even get the key in the lock. When you find yourself not knowing where a dirty plate should go as you know it isn’t the sink, but can’t remember buying the dishwasher. Independence means not having someone follow your every move, ready to jump up if you fall. It means not being left feeling as though you have become the stupidest person to ever live, because you can’t do today, what yesterday would have been simple and no matter how much help you have, you will never be independent again. I can’t exist for any length of time now without someone there to help me, be it with a phone, a door or a thought process. I’m luck as the person is someone I know and I love, and also knows me and loves me, I have the support I need and also accept that I need it. I really don’t see how any government can replace what I have, maybe they should stop calling it independent living and call it supported living instead, I don’t think it would sound so much like a threat and more like a gift.

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.