So there we have it, 2008 is more or less over, all bar one day and I thought I ought to try and recap and reflect on what sort of effect its had on me, its been rather interesting!
Before you start, I know it’s a day early, but I’ll be out New Years Eve, and frankly that’s more fun than writing a blog…
2008 then, it has been a rather interesting and odd year; trouble is that its unlikely that I can remember all of the interesting facts, there has been quite a few.
I remember where the year started very clearly, it was on msn talking to my long time partner in crime Kev and an old assistant called Rach (there have been a few Rachels this was the most troublesome one). It was rather odd talking to her that night on msn, as she was supposed to be working for me, to enable me to go out and celebrate New Years in the time old traditional way of getting drunk with people you don’t know and pretending like you were best mates. Unfortunately she had for some reason or another said that she couldn’t make it in, at stupidly short notice. This meant that there was no one to assist me, so I had to go back to my parents. Normally this isn’t that much of a big deal, but New Years in a tiny town where you don’t know anybody isn’t the most fun you can have. So there I am on a camp bed in the lounge, listening to Jools Holland’s Hootenanny chatting to Rach and Kev. Had a bit of a heart to heart with Rach, up until that point we hadn’t spoken, after not parting on the best of terms. Terms that aren’t altogether fair to comment on here, but needless to say things weren’t pretty for a while. So we had a chat on msn and almost sorted things out, except for my annoyance that the excuse she had for not turning up wasn’t real, as she was at someone else’s working for them!! Good start to the year eh….
The next major significance of the year was my first sacking of a PA. I don’t do it lightly but sometimes it has to be done. For a tiny bit of background and context, she arrived at the interview with her mum and her sister. Her mum did all the talking and she didn’t seem that bothered. Out of desperation I employed her anyway. She wasn’t overly good at her job, and it came to a head when she left a pile of snotty tissues in their room at the end of her shift. She had to go!
That did mean that there was a vacancy though, which fortunately was filled by my other Rachel, who was and still is awesome. She has never let me down and has always been, and I am sure will always be there for me. So there we were spending the weekends together doing the normal stuff and having a lovely old time. However Rach was off to the party islands for the summer, something that she did most years, so I needed to find another person to work for me in the mean time till she came back. I found an ace girl called Lauren. Although she only lasted for six weeks, (she found a proper job) she was amazing; there should be more people in the world like her, and Rach for that matter.
So there I was coming up to the end of the summer, expecting Rach to come back and getting on just fine with Lauren, when my world, metaphorically, came crashing down! First Lauren told me that she was leaving, I totally understood, she was off to do her dream job and I was so pleased for her. The problem was mine and it was personal. I ended up liking her as a person, which is fantastic in the grand scheme of things, as it means the social aspects of the job are far more relaxed and fun. The down side to that is when they leave, as with all friendships that undergo a separation in the form of physical distance and less frequent contact I knew that the friendship would fade, and that made me sad. I am pleased to say that we are still in touch, long may it continue, but msn and the odd phone call here and there aren’t the same as chatting over a coffee in a coffee shop in Oxford!
I am sure by now that the astute of you can work out what the next blow was, yep you’ve guessed it, Rach left. She was in Greece and she text me to say that the other woman she had worked for offered her full time hours and that she couldn’t afford to turn them down. Again completely understandable but again the separation and lack of contact mentioned a few minutes ago was a major down side. Except with Rach it was intensified by the fact that I had spent most weekends with her for the last 3 or so years. I don’t like to use sentimental metaphors or any such nonsense but to illustrate the point I feel I need to, when Rach left it really did feel like I was losing a family member. Having actually spent more time with her than anyone in the last 3 years, it came as an immense shock to know that suddenly she would no longer be there. I know that you shouldn’t get attached to people that you interact with in a professional sense, but when you live, eat, go out and have fun together it is hard not to. My July blog, Loss… was written at the time that all of this was happening, I didn’t mention it in that blog but it might now put it more into context, its worth a read. I am glad to say at this point though that I have kept in touch with Rach, and she has been back to do a shift, and hopefully will be back more permanently in the future, watch this space!
Lauren and Rach’s departure meant that I had to replace them with new people. I’ve already talked about this in the last blog, Heinz 57…. A Variety (of blog subjects). I may have been a little premature in saying that the two that I employed were both awesome; one is a bit less than awesome. However, for now I can’t comment on who, or why, it’s not fair as they still work for me. Just keep an eye out in future blog postings.
The other major change that I experienced this year was drastically changing my career. I have talked about that already too, but now I am nearly 4 months in I’d like to say that I am still thoroughly enjoying it. It’s so nice to be appreciated for what you do and to be encouraged to do things well. I also work with a bunch of cool people and do things that are on the whole very interesting. I am not saying that incase someone from there reads this either, I am actually enjoying it so far, long may it continue!
So after the summer and a lovely holiday in France and starting the new job, October came, and with it the lowest point of the year. My granddad died. I was in London on the weekend that it happened and for one reason or another had ended up back in the hotel room after a heated debate with the PA and was told the sad news. It wasn’t unexpected; as he had been diagnosed with cancer a while before, and due to a plethora of other medical issues it couldn’t really be treated effectively. I could go on about the tried and trusted methods of consoling yourself when it comes to the loss of a relative who has been suffering by saying that at least now he isn’t suffering. Which of course I am very glad he isn’t, but it was still a painful fact to take on board. Added to this was an immense sense of guilt. I still feel it today, and am fairly certain that no matter who tells me that he would have understood or that he knew I cared, I will feel for a long time to come, possibly for the rest of my life. The guilt arose because I hadn’t talked to him in a week or two. It was common knowledge that he was not well, and more than likely wasn’t going to last for a lot longer. I had the urge to call him on the Tuesday before I went to London, but didn’t have much to say to him. I knew that he struggled to talk on the phone, each time I rang him he sounded like it was an effort, but that he was pleased to hear my voice. I had been thinking about it while I had been trying to get to sleep on the Monday. Going over what I might say to him on the next day. I wanted to tell him how much I loved him and how I was proud to be his grandson, how I missed him and felt bad that I hadn’t seen him in such a long time. The reason for which was because he was stuck in his house, which unfortunately I couldn’t get my wheelchair into. However the more I thought about it the more it sounded like a rehearsed Hollywood tear jerker, and I didn’t want it to sound fake, I really did mean it. With this in mind I decided to put it off till the week after so that I could tell him all about what I had been up to in London, as the last time we had chatted I had told him that was where I was off to. I never got to make that call, and when I was speaking to my Nan on the phone I has this wave of grief wash over me, coupled with the guilt of not speaking to my Granddad one final time. It was a weird being in a featureless hotel room in London with a PA you had been arguing with contemplating eternity and your place in the grander scheme of things, dealing with grief and guilt, so far from anyone who cared. It isn’t something that I would recommend to anyone. I lay there on the hotel bed and blankly staring at the television, decided to text the only person I could think that might care, Rach. To which the PA in the room said, “why do you keep texting people, you text to much”? I wasn’t in the best of moods so I just told her a friend. After a couple of hours in silence, I decided to go to bed, and after she had helped me in, casually said “have you had a good day?” It was reassuring to know her interpersonal skills were so well developed.
The day of the funeral came and went, it was a sad occasion. It was odd to go out after the service to hear some coffin carrier guy ask the vicar how it went, and then be told, it was ok they were well behaved. It put it all back into perspective, death is a process, by the time that the funeral has happened the person is gone, and it’s only the memories of them that remain. Death doesn’t matter if its not directly connected to you, you can feel compassion or sympathy, but it doesn’t hurt the way that it does if it’s someone close. To them it was just another day at the office.
The only two other points of interest to tell you about this year are my two new forms of transport. I recently acquired a van, its ace; I can now drive my chair straight up the ramp at the back and head anywhere I like. The world is now literally my playground. Also after almost nine years of superb service it was time to trade in my purple Quickie F55 wheelchair, I now have a metallic grey Quickie F55s wheelchair. The s, like any boy racer will tell you, stands for sport. This chair is quick, there is a high chance that I will injure myself in it, I already spun out the other day, good job there was nothing to bang into and more importantly no one to see my mistake! Its also got a full compliment of comedy light, including indicators, and the seat rises up, so in a bar I can now chat face to face with people, which will be very handy for certain things…
So there you have it, the biggest and most memorable bits of 2008 for me. There have been some ups and some downs, but overall its been a good experience. I’ve met some interesting people along the way, who I am sure will turn out to be good friends, sadly I’ve also lost some people along the way, but its all part of life! I’ll try and keep you more updated in 2009 about my adventures, I have been a bit slack with the entries this year, but in my defence I don’t want it turning into a monotonous repetitive diary, I want you to be interest and to enjoy reading it.
I’ll finish here by wishing you all a very happy new year, I hope that it treats you well and that you make it through unscathed! You can keep track of mine and chart my progress, I have no idea where I’ll be this time next year, but hopefully I will have worked in London!
Happy New Year!
Wednesday, 31 December 2008
Saturday, 4 October 2008
Heinz 57…. A Variety (of blog subjects)
Right, apologies to some of you who have been hassling me, the last post was in July, I know it’s been nearly three month, but I have a life! If I didn’t there would be nothing to write about!
So where to start? Well since I last spoke to you, I have drastically changed my lifestyle! Its all been rather exciting and intriguing all at the same time!
Firstly I’ll start with a reference to the last post entitled, Loss. As the more astute of you may have guess that was me trying to sort things out in my head, I don’t do emotional wreckage, but I do seem to bottle well and then try and make sense of it in a logical way without revealing any details of what the problem is! I know its not good to bottle things up but it’s my way, calm and neutral all the way, usually.
Loss was triggered by a PA leaving, then to compound it after I had written it another left. Both of whom I considered to be good friends, and hopefully they still are, it was just a time when I thought it had all settled down and I have a great set of people. If you read Loss and read between the lines you can see how I felt, so I won’t go over it again here…
So after those two lovely people departed my life it was time to fill the void! That’s the first fun story to tell you. So there I was needing two new personal assistants. I did the usual of putting the generic advert on Gumtree and waiting with baited breath to see what I got back. Its always fun…
I am going to let you into my life a little here so you can see the hilarity of the sort of responses you get in my lifestyle. I won’t bore you with the whole advert, but I think for illustrative purposes it’s important that I show you the last two paragraphs.
“If you are interested in the job and would like more information or to apply please send me an email with your CV to xxxxxxxxxxx@hotmail.co.uk
I would also be grateful if you would include a bit about yourself, and what you like to do, just so I could get a picture of the sort of person I am employing!”
Now, I am going to credit you with some intellect, after all you read my ranting and lunacy, but some of the replies didn’t quite come up to the same standard. All I am asking for is a CV and a bit of writing about yourself, just so I can get a tiny bit of a feel for the sort of person I am employing, is it too much to ask? Really? Well, have a look at some of the replies I got, I promise you hand on heart that I have just cut and pasted these, and then bolded and italicised them to make them stand out, all grammar and style is how it arrived!
Contestant Number One
“hello my name is Elaine Im interested in the position please do not hesitate to call me with any questions you would like me to answer my mobil no is 07xxxxxxxx”
Contestant Number Two
“hello there iam zoltan from romania and i work here as as a pa carer and iam looking for a similar job position in uk iam experienced carer i can prove a reference iam non smoker reliable trustworthy 36 years old male and i would like to help this gentleman so i could start really soon so iam looking forward to hear from you”
and then on a second email he added…
“sorry i write yo again a must tell you more about me i like to trawel i have been in 22 country when i was younger i wote many articles about music mostly 80's music british too 1999 i was living in uk and ireland i like the british culture i speak four languages i think i could be a good company for you since 2007 romania is also member of eu union i like the british lifestyle normaly iam hungarian but i was born in romania there is a national minority in romania i really like to trawel and i want to go back in uk asap so you can cant on me best wishes.”
Now, firstly before I berate these idiots, I would like to point out I am not a xenophobe, but I do dislike idiots who cannot seem to follow simple instructions.
I specifically asked for a CV, both Elaine and Zoltan failed on that one!
More scarily though, did you see Zoltan’s last line? I want to go back in the uk asap!
Oh my how the alarm bells rang, needless to say he didn’t get an interview, funnily enough neither did Elaine.
Why is it so hard to follow instructions these days? I want people I can rely on to work for me, not moronic oafs!
Anyway from the emails I had I decided to hold three interviews. The first was the strangest, most uncomfortable, dull, painful experiences I have ever had.
Admittedly I did have a chat to her beforehand on the phone and say to her that she didn’t need to worry too much, it was not completely formal. She was very nervous, I wanted to give her a fair chance. I was wrong to do that I think! She was so dull! When we had gone through her career history, “I work in an home for people with mental difficulties”, I decided to move onto her as a person, as in reality, experience isn’t vital, I can teach anyone what is needed. So there I was, I asked her the killer question, “so, what do you like doing at the weekends when you aren’t at work”.
I naively thought that this might give her free reign to describe herself and what she likes to do, it was after all for a weekend post, and if we liked doing the same things, it could work out after all.
I got this as a reply, “not much, I tend to just sit on the sofa”.
Most of you reading this know me, and for those of you that don’t, I am a pretty sociable, active, fun loving individual, so I was starting to think she wasn’t the right person for the job. My suspicions were confirmed when she said, I need to pop some pills, and proceeded to drop some pills into her drink…
Thankfully that was near the end of the interview, after forty minutes or so of painful awkwardness it was time for her to leave. Just as she stepped over my threshold and out of the door, she turned back to me and said, “I’m gonna be the best candidate you get you know”.
How I prayed she would be wrong!!
Thankfully she was, the next two people I employed got the jobs! I now have two cool people, who I am getting to know, it was only six weeks ago they started, and so far so good!
So there you have it, my comedy PA interview story, after I had done that, it was time to live life! They weren’t going to start working for me until September, and by the time I had chosen them it was the end of July, beginning of August.
Simultaneously to this happening, I finished working as a college lecturer and technician. I have a new job! Gone are the late nights of lesson planning and things of that nature. I now work at a software company (widgit), making resources for people with literacy difficulties, its great, the people there are all so nice, and so far it’s been pretty easy! Think they like me too, which is always a bonus. I’ll fill you in more on the job as it happens, and I am sure there will be adventures along the way, watch this space.
The software company job is four days a week, which is dead handy for me as I can still work for Hereward, the college I used to teach at, as a researcher, which I really love doing, its so varied, I love it! It also meant that I was around to be asked to teach again in the evenings, but this time for Coventry Adult Ed, not Hereward, which is a bonus, twice the hourly rate for the same job, and also another night at a school across the city, handy income for Christmas!
Its really nice to be in a position of financial security these days, seems ironic its happened to me just as the rest of the world is in a credit crisis. Don’t get me wrong I am not smug, just happy and grateful to have the new security!
Mental checklist time, that’s new job and PAs covered, on to the holiday!
I had a great holiday this year, with the family in a trailer tent in France. I really honestly do love camping, and I love France too. There aren’t many interesting stories to tell you from France, had a lovely time and got to take photo’s, was nice to be taking them again rather than teaching people how to do it, especially with my new camera! Yes I finally moved into the digital age, I bought a Panasonic LX3. I am not going to review it in any depth, as I don’t want to! I think its ace, it is completely easy to use and totally suits my needs, I love it.
I will put some of the pictures on flickr sooner or later, I particularly love the sunset, so keep an eye out and see what you think to them, all comments are welcome!
So that pretty much brings us up to date, except for I have had a meeting with the Social Worker, who I am sure is still on a path to reducing my support that I get.
As a bit of background for you, I decided to get militant, you will know from previous posts that they have been after me for a while. So I thought I would seek a bit of medical backup, in the form of a leading neuro-scientist, who is very well respected in his field, and is a leading specialist on my particular condition.
I got an appointment to see him, and forewarned my social worker with this polite but forceful email… (don’t worry its only an extract!)
“What will the reassessment of the care package involve?
If it is a reassessment of my needs I would prefer to wait until I have seen the country's leading neuro-science specialist at the John Radcliffe
Hospital in Oxford, as he is a leading medical voice in Muscular
Dystrophy, and as my condition is genetically unique, I would rather wait to have his assessment of my needs, as I feel that it would be an unfair assessment due to the lack of knowledge of my condition both on my and social services part.
I am in contact with the John Radcliffe and am awaiting an appointment.
I also feel personally that if the reassessment of my needs means that I incur a reduction in the amount of support I receive it is defeating the point of assisting me to become more independent.”
I think that this is a fair email, I want a specialist to give me advice, no one really knows what is going to happen to me as I am a bit of a genetic oddity. I got this response… (another extract).
“I have explained before that the services which the Team provides are dependent on whether your needs meet the current Eligibility Criteria and not necessarily on your medical condition - a change in Eligibility Criteria can result in either an increase or reduction in service even if the medical condition remains unchanged.
An annual review is carried out with all service users to ensure that their care package still meets their needs and can result in the package remaining the same, decreasing or increasing. Where possible any needs that cannot be met under the Eligibility Criteria are covered by an application to the ILF - but in your case the most recent application was turned down as there are timescales which were exceeded. In some instances funding can also be provided by Health (your night support needs are met this way) or by Access To Work (who fund 40 per week support for you).
The re-assessment is not being done in order to cut your package but clearly this could be one outcome of the assessment.”
Sorry, if you’ve stuck with me this far, its ranting time again, but I promise this will be the last one, of this post anyway up to the end of this sentence we are up to two thousand one hundred and sixty seven words!
So, if I paraphrase the first paragraph of that extract they are saying to me, that it doesn’t actually matter if my needs change medically, it’s all about the criteria that they fund. These criteria are reviewed annually at the Council, and then they decide which band they are funding, if a need that gets supported one year isn’t in the funded criteria band after they have reviewed it, I get less help! Something doesn’t seem at all right there to me, what do you think?
Secondly is it just my paranoia, or does that last sentence ring of premeditated package cutting, and contain a veiled threat? Again perhaps I am just being a silly disabled person, clearly what my Social Work Team seems to think I am! I’ll keep you informed as to what happens with this one, I’ll warn you now though, if it doesn’t go my way, you may see a lot more of me, I am going to the media, because I think that this is shocking, and that it’s a daft way to run support services, all I am trying to do is live a normal life! We aren’t talking local media either; you’ll see me on the breakfast news and GMTV!
Right so there you have it more of a catch up than anything particularly structured or meaningful, hope you enjoyed the insight…
Tell you what, let’s do it over coffee in Browns next time, get in touch if you want to take me up on the offer! We'll arrange a time!
This is the real test of whether anyone reads my blog, scared now it might be an expensive round!
russ.smith.01@googlemail.com
So where to start? Well since I last spoke to you, I have drastically changed my lifestyle! Its all been rather exciting and intriguing all at the same time!
Firstly I’ll start with a reference to the last post entitled, Loss. As the more astute of you may have guess that was me trying to sort things out in my head, I don’t do emotional wreckage, but I do seem to bottle well and then try and make sense of it in a logical way without revealing any details of what the problem is! I know its not good to bottle things up but it’s my way, calm and neutral all the way, usually.
Loss was triggered by a PA leaving, then to compound it after I had written it another left. Both of whom I considered to be good friends, and hopefully they still are, it was just a time when I thought it had all settled down and I have a great set of people. If you read Loss and read between the lines you can see how I felt, so I won’t go over it again here…
So after those two lovely people departed my life it was time to fill the void! That’s the first fun story to tell you. So there I was needing two new personal assistants. I did the usual of putting the generic advert on Gumtree and waiting with baited breath to see what I got back. Its always fun…
I am going to let you into my life a little here so you can see the hilarity of the sort of responses you get in my lifestyle. I won’t bore you with the whole advert, but I think for illustrative purposes it’s important that I show you the last two paragraphs.
“If you are interested in the job and would like more information or to apply please send me an email with your CV to xxxxxxxxxxx@hotmail.co.uk
I would also be grateful if you would include a bit about yourself, and what you like to do, just so I could get a picture of the sort of person I am employing!”
Now, I am going to credit you with some intellect, after all you read my ranting and lunacy, but some of the replies didn’t quite come up to the same standard. All I am asking for is a CV and a bit of writing about yourself, just so I can get a tiny bit of a feel for the sort of person I am employing, is it too much to ask? Really? Well, have a look at some of the replies I got, I promise you hand on heart that I have just cut and pasted these, and then bolded and italicised them to make them stand out, all grammar and style is how it arrived!
Contestant Number One
“hello my name is Elaine Im interested in the position please do not hesitate to call me with any questions you would like me to answer my mobil no is 07xxxxxxxx”
Contestant Number Two
“hello there iam zoltan from romania and i work here as as a pa carer and iam looking for a similar job position in uk iam experienced carer i can prove a reference iam non smoker reliable trustworthy 36 years old male and i would like to help this gentleman so i could start really soon so iam looking forward to hear from you”
and then on a second email he added…
“sorry i write yo again a must tell you more about me i like to trawel i have been in 22 country when i was younger i wote many articles about music mostly 80's music british too 1999 i was living in uk and ireland i like the british culture i speak four languages i think i could be a good company for you since 2007 romania is also member of eu union i like the british lifestyle normaly iam hungarian but i was born in romania there is a national minority in romania i really like to trawel and i want to go back in uk asap so you can cant on me best wishes.”
Now, firstly before I berate these idiots, I would like to point out I am not a xenophobe, but I do dislike idiots who cannot seem to follow simple instructions.
I specifically asked for a CV, both Elaine and Zoltan failed on that one!
More scarily though, did you see Zoltan’s last line? I want to go back in the uk asap!
Oh my how the alarm bells rang, needless to say he didn’t get an interview, funnily enough neither did Elaine.
Why is it so hard to follow instructions these days? I want people I can rely on to work for me, not moronic oafs!
Anyway from the emails I had I decided to hold three interviews. The first was the strangest, most uncomfortable, dull, painful experiences I have ever had.
Admittedly I did have a chat to her beforehand on the phone and say to her that she didn’t need to worry too much, it was not completely formal. She was very nervous, I wanted to give her a fair chance. I was wrong to do that I think! She was so dull! When we had gone through her career history, “I work in an home for people with mental difficulties”, I decided to move onto her as a person, as in reality, experience isn’t vital, I can teach anyone what is needed. So there I was, I asked her the killer question, “so, what do you like doing at the weekends when you aren’t at work”.
I naively thought that this might give her free reign to describe herself and what she likes to do, it was after all for a weekend post, and if we liked doing the same things, it could work out after all.
I got this as a reply, “not much, I tend to just sit on the sofa”.
Most of you reading this know me, and for those of you that don’t, I am a pretty sociable, active, fun loving individual, so I was starting to think she wasn’t the right person for the job. My suspicions were confirmed when she said, I need to pop some pills, and proceeded to drop some pills into her drink…
Thankfully that was near the end of the interview, after forty minutes or so of painful awkwardness it was time for her to leave. Just as she stepped over my threshold and out of the door, she turned back to me and said, “I’m gonna be the best candidate you get you know”.
How I prayed she would be wrong!!
Thankfully she was, the next two people I employed got the jobs! I now have two cool people, who I am getting to know, it was only six weeks ago they started, and so far so good!
So there you have it, my comedy PA interview story, after I had done that, it was time to live life! They weren’t going to start working for me until September, and by the time I had chosen them it was the end of July, beginning of August.
Simultaneously to this happening, I finished working as a college lecturer and technician. I have a new job! Gone are the late nights of lesson planning and things of that nature. I now work at a software company (widgit), making resources for people with literacy difficulties, its great, the people there are all so nice, and so far it’s been pretty easy! Think they like me too, which is always a bonus. I’ll fill you in more on the job as it happens, and I am sure there will be adventures along the way, watch this space.
The software company job is four days a week, which is dead handy for me as I can still work for Hereward, the college I used to teach at, as a researcher, which I really love doing, its so varied, I love it! It also meant that I was around to be asked to teach again in the evenings, but this time for Coventry Adult Ed, not Hereward, which is a bonus, twice the hourly rate for the same job, and also another night at a school across the city, handy income for Christmas!
Its really nice to be in a position of financial security these days, seems ironic its happened to me just as the rest of the world is in a credit crisis. Don’t get me wrong I am not smug, just happy and grateful to have the new security!
Mental checklist time, that’s new job and PAs covered, on to the holiday!
I had a great holiday this year, with the family in a trailer tent in France. I really honestly do love camping, and I love France too. There aren’t many interesting stories to tell you from France, had a lovely time and got to take photo’s, was nice to be taking them again rather than teaching people how to do it, especially with my new camera! Yes I finally moved into the digital age, I bought a Panasonic LX3. I am not going to review it in any depth, as I don’t want to! I think its ace, it is completely easy to use and totally suits my needs, I love it.
I will put some of the pictures on flickr sooner or later, I particularly love the sunset, so keep an eye out and see what you think to them, all comments are welcome!
So that pretty much brings us up to date, except for I have had a meeting with the Social Worker, who I am sure is still on a path to reducing my support that I get.
As a bit of background for you, I decided to get militant, you will know from previous posts that they have been after me for a while. So I thought I would seek a bit of medical backup, in the form of a leading neuro-scientist, who is very well respected in his field, and is a leading specialist on my particular condition.
I got an appointment to see him, and forewarned my social worker with this polite but forceful email… (don’t worry its only an extract!)
“What will the reassessment of the care package involve?
If it is a reassessment of my needs I would prefer to wait until I have seen the country's leading neuro-science specialist at the John Radcliffe
Hospital in Oxford, as he is a leading medical voice in Muscular
Dystrophy, and as my condition is genetically unique, I would rather wait to have his assessment of my needs, as I feel that it would be an unfair assessment due to the lack of knowledge of my condition both on my and social services part.
I am in contact with the John Radcliffe and am awaiting an appointment.
I also feel personally that if the reassessment of my needs means that I incur a reduction in the amount of support I receive it is defeating the point of assisting me to become more independent.”
I think that this is a fair email, I want a specialist to give me advice, no one really knows what is going to happen to me as I am a bit of a genetic oddity. I got this response… (another extract).
“I have explained before that the services which the Team provides are dependent on whether your needs meet the current Eligibility Criteria and not necessarily on your medical condition - a change in Eligibility Criteria can result in either an increase or reduction in service even if the medical condition remains unchanged.
An annual review is carried out with all service users to ensure that their care package still meets their needs and can result in the package remaining the same, decreasing or increasing. Where possible any needs that cannot be met under the Eligibility Criteria are covered by an application to the ILF - but in your case the most recent application was turned down as there are timescales which were exceeded. In some instances funding can also be provided by Health (your night support needs are met this way) or by Access To Work (who fund 40 per week support for you).
The re-assessment is not being done in order to cut your package but clearly this could be one outcome of the assessment.”
Sorry, if you’ve stuck with me this far, its ranting time again, but I promise this will be the last one, of this post anyway up to the end of this sentence we are up to two thousand one hundred and sixty seven words!
So, if I paraphrase the first paragraph of that extract they are saying to me, that it doesn’t actually matter if my needs change medically, it’s all about the criteria that they fund. These criteria are reviewed annually at the Council, and then they decide which band they are funding, if a need that gets supported one year isn’t in the funded criteria band after they have reviewed it, I get less help! Something doesn’t seem at all right there to me, what do you think?
Secondly is it just my paranoia, or does that last sentence ring of premeditated package cutting, and contain a veiled threat? Again perhaps I am just being a silly disabled person, clearly what my Social Work Team seems to think I am! I’ll keep you informed as to what happens with this one, I’ll warn you now though, if it doesn’t go my way, you may see a lot more of me, I am going to the media, because I think that this is shocking, and that it’s a daft way to run support services, all I am trying to do is live a normal life! We aren’t talking local media either; you’ll see me on the breakfast news and GMTV!
Right so there you have it more of a catch up than anything particularly structured or meaningful, hope you enjoyed the insight…
Tell you what, let’s do it over coffee in Browns next time, get in touch if you want to take me up on the offer! We'll arrange a time!
This is the real test of whether anyone reads my blog, scared now it might be an expensive round!
russ.smith.01@googlemail.com
Monday, 21 July 2008
Loss...
Loss eh, what is it all about? People experience a spectrum of loss on a daily basis, from losing something worthless or menial such as a post-it note with a small reminder on, that’s fallen off of the cover of their diary along the way, through the hassle of losing a set of keys, right up to the pinnacle of loss, the death of a loved one.
Although my life hasn’t been long and I’ve not been through many of the hardships that people can live through, I have suffered loss. I have lost the aforementioned post-it note, the keys (on a scarily regular basis), and friends and family.
There is no point arguing that loss doesn’t hurt, it does. It is a simple fact that human beings feel loss, I think though it is down to the individual how much this loss affects their life. It is character building in the cruellest sense. Coping with loss is something that we all do individually and loss itself is something that shapes us by its very nature.
To some losing that little note with a message on might not be the end of the world, however to some it can seem like an insurmountable deficit. Imagine if you will that the little note said, “Remember to put the bin out”. Not a huge problem if you lose it and forget, your bin is fuller than normal for a week. However if you now consider that the little note that has been lost was from a loved one that you no longer see, it becomes a very different scenario. That little note that is now lost has huge emotional attachments and meaning and leaves a hole so immense that it can feel like the world is imploding around you.
The loss that I have experienced in life hasn’t been as trivial as that, but at the same time hasn’t been as intense as some losses that anyone reading this may have encountered. I can tell you what has happened and how it felt and what I think, if you want to stop and listen for a bit…
The first experience of loss that I clearly remember was when our old neighbour Renee died. I must have been about 8 or 9, I could be wrong it was a fair time ago. I remember that it was a school morning and my Mum was helping me get ready, and another of our neighbours, Les came to the back garden and leaned over the fence, my Mum went up to him and told her that Renee had died. Now this wasn’t entirely unexpected, as she had been suffering with cancer for a while, I can’t tell you how long for or anything like that, as I was a child and my perception of time was much different back then. Anyway, my mum came back down to the house, clearly crying, she was much closer to Renee than I was, and she told me that Renee had died. Now I clearly remember sitting there in our living room, head in my hands crying. However looking back at it with 15 or so years more living under my belt, I am not sure what I was crying for. At the time I don’t think that I fully understood the consequences of Renee’s death and what the loss would entail. I remember knowing that death was permanent and that I would not see her anymore, that for her it was over, but I didn’t appreciate that time is a good healer. I don’t want to sound heartless, Renee was a sweet old lady who was a good friend of the family but I didn’t realise at the time that in the grand scheme of things a neighbour was a loss that is something that you can recover from fairly easily. That isn’t to say that I have ever forgotten her, here I am 15 years later writing about her, but the pain isn’t there anymore. The feeling of something missing, a part of you that is no longer there. She is now a memory of a time where I was a child, and life was easier, I tend to remember the times in her kitchen eating biscuits, and her dog barney, and her husband Jim. Like I said time is a good healer.
I’ve had deaths in the family too, my great Nan and great uncle died. These again were times where I felt loss. The bigger of the two being that of my great Nan. Now I feel like I should try and justify myself here, and apologise if I cause any offence, as I could come across as heartless and mean, but I can assure you that I have the greatest respect for Nan and Brian, this account is just my perspective of the situations. If I cause any distress or offence I am sorry…
When Brian died it came as a bit of a shock, he died suddenly and without warning. It was obviously a distressing time for the family members that were closest to him, however I did not know him that well. I knew of him but thinking back probably saw him, for the last time, about 5 years before he died. I remember him as a kind, witty man who always had a smile and something to say to me, but other than that I do not remember much of him. When I was at his funeral, I remember looking around the crematorium and seeing different levels of grief. This to me is where loss is very subjective, the closer you are to the loss the more you will feel it, and the more it will affect you. Its how you deal with it and move on that are important.
My great Nan was a bit of a different story; she had been suffering with mental deterioration for the last few years of her life. I loved my great Nan, I remember seeing her once or twice a year when I was growing up. She lived above a shop in London and was your stereotypical great old Nan. She used to be so warm and friendly and always was happy to see us. I remember how she used to give me and my brothers goody bags to take back in the car with us, for the journey home. Those were the happy memories of her that I have. Sadly, the last memories I have of her were of her in her room at her nursing home, she was being well looked after, but she wasn’t the woman that I remembered from my childhood. It was sad to see her deterioration, because the last time I had seen her was at her home, she was pottering around and lucid, and not the old lady that sat in front of me on that day, not really remembering who I was. I suppose thinking philosophically about the situation that this made losing her a bit more bearable as you could take comfort in the fact that she was no longer suffering. In reality though the news of her death still had a large impact on me. I was at college and I think it was my Mum who phoned me to tell me. The news hit and me and I absorbed it and dealt with it. It made me sad but I knew that Nan would no longer be suffering and that she would at last be at rest, but I still knew that I would never see her again. I did a pretty good job of suppressing the emotions that I was feeling until I was asked by a friend why I was quiet. When I told her that my Nan had died, it hit me and I could feel tears running down my cheeks. This luckily has been the only time that true loss has hit me and I have outwardly acknowledged it and it has affected me in a direct emotional response. Again however time has given perspective and healing qualities. My Nan is still gone, and that isn’t going to change, but I have the memories of her in her flat, and in the back of the shop, in my mind she is sewing dresses, and making cups of tea, and sitting in her big armchair, talking to us and asking us about school and the things we had been up to. The loss is bearable, and I know that it has changed me as a person, made me more able to take the larger view of the picture…
There is one other type of loss that I want to talk to you about if you are still with me? That’s the loss of friends, and I don’t mean to death, I mean the loss of friends due to time and geographical distance. Friendships are some of the most complicated things in existence, for many reasons, but the loss of is always easy but never pain free.
I have had many friends over the years, and sadly have lost touch with a great deal of them. I’ve talked about this in my other post, The Comedy Of Growing Up.
I think that it is the degradation and eventually loss of these friendships that is the saddest and potentially the most painful. In terms of analysing the effect of this hurt, it isn’t the harsh hit of someone dying, it is more of a slow gnawing feeling of sadness that eats away at you for much longer, until one day you either forget or meet them again.
However this statement is pretty inaccurate, I know from experience that you never truly forget a friend. When someone has been in your life, either for long enough, or in a concentrated amount of time, enough for you to let your guard down and become good friends, how can you really ever forget them? It is like they leave and indelible mark on your soul that will never truly be erased. It is these moments of loss that test the mettle of any friendship. If you stay in touch over the years then it is a solid friendship that deserves to stand the test of time, again time is a good healer, and you can get over it, but as long as the friend is alive, you will always wonder what they are up to, how they are or if they even remember you. I also feel that with social networking it is taking some of the lessons of loss out of friendships, but I have talked about that before, so I won’t bore you with it again!
I think also that age has a lot to do with how we experience loss, it is only lately that it has started to make me think. I am not sure if it is definitely age, but I think it has a lot to do with it. I have met and befriended and lost a lot of people lately, and it starts to make you question the futility of human relationships. Don’t get me wrong, I am not a cynic and I am not depressed, but as soon as you let your defences down and let people in, they leave, or you lose touch and then you move on. I am aware that it is human nature and that it is more than likely a hard wired survival mechanism, but it is one that doesn’t lead to a happy blogger!
I reckon here is probably a good place to start to sum up this ramble, don’t you… I think that loss is a good mechanism of making you appreciate the present, which becomes the past, more than you perhaps do. If loss is in the back of your mind now and then it makes you conscious to make the effort to make the present as good as it can be, as you never know when you might lose the situation or person or object that you are in the present with. Loss also makes you appreciate the past, makes you remember the happy times more vividly and makes the sad times duller in detail. I am almost certain that anyone remembering the loss of something or someone will remember happy times they spent, rather than the sad ones!
Loss also gives you a good grounding for the future. Without loss you have no emotional landmark to judge against, you have no way of knowing what it feels like to lose, and therefore no appreciation of what you have got, and more importantly what it has the potential to be.
I would like to think that loss has a bearing on all of us and shapes our characters for the better. I would say in my case it has helped me to grow and see the larger picture and not to get too hung up on the smaller aspects of the whole.
My words of advice, for what they are worth would be, loss is a strange old thing, try not to let it swallow you up, deal with it in your own way and time and try and remember that something or someone is never truly lost as long as you still have the memories…
Although my life hasn’t been long and I’ve not been through many of the hardships that people can live through, I have suffered loss. I have lost the aforementioned post-it note, the keys (on a scarily regular basis), and friends and family.
There is no point arguing that loss doesn’t hurt, it does. It is a simple fact that human beings feel loss, I think though it is down to the individual how much this loss affects their life. It is character building in the cruellest sense. Coping with loss is something that we all do individually and loss itself is something that shapes us by its very nature.
To some losing that little note with a message on might not be the end of the world, however to some it can seem like an insurmountable deficit. Imagine if you will that the little note said, “Remember to put the bin out”. Not a huge problem if you lose it and forget, your bin is fuller than normal for a week. However if you now consider that the little note that has been lost was from a loved one that you no longer see, it becomes a very different scenario. That little note that is now lost has huge emotional attachments and meaning and leaves a hole so immense that it can feel like the world is imploding around you.
The loss that I have experienced in life hasn’t been as trivial as that, but at the same time hasn’t been as intense as some losses that anyone reading this may have encountered. I can tell you what has happened and how it felt and what I think, if you want to stop and listen for a bit…
The first experience of loss that I clearly remember was when our old neighbour Renee died. I must have been about 8 or 9, I could be wrong it was a fair time ago. I remember that it was a school morning and my Mum was helping me get ready, and another of our neighbours, Les came to the back garden and leaned over the fence, my Mum went up to him and told her that Renee had died. Now this wasn’t entirely unexpected, as she had been suffering with cancer for a while, I can’t tell you how long for or anything like that, as I was a child and my perception of time was much different back then. Anyway, my mum came back down to the house, clearly crying, she was much closer to Renee than I was, and she told me that Renee had died. Now I clearly remember sitting there in our living room, head in my hands crying. However looking back at it with 15 or so years more living under my belt, I am not sure what I was crying for. At the time I don’t think that I fully understood the consequences of Renee’s death and what the loss would entail. I remember knowing that death was permanent and that I would not see her anymore, that for her it was over, but I didn’t appreciate that time is a good healer. I don’t want to sound heartless, Renee was a sweet old lady who was a good friend of the family but I didn’t realise at the time that in the grand scheme of things a neighbour was a loss that is something that you can recover from fairly easily. That isn’t to say that I have ever forgotten her, here I am 15 years later writing about her, but the pain isn’t there anymore. The feeling of something missing, a part of you that is no longer there. She is now a memory of a time where I was a child, and life was easier, I tend to remember the times in her kitchen eating biscuits, and her dog barney, and her husband Jim. Like I said time is a good healer.
I’ve had deaths in the family too, my great Nan and great uncle died. These again were times where I felt loss. The bigger of the two being that of my great Nan. Now I feel like I should try and justify myself here, and apologise if I cause any offence, as I could come across as heartless and mean, but I can assure you that I have the greatest respect for Nan and Brian, this account is just my perspective of the situations. If I cause any distress or offence I am sorry…
When Brian died it came as a bit of a shock, he died suddenly and without warning. It was obviously a distressing time for the family members that were closest to him, however I did not know him that well. I knew of him but thinking back probably saw him, for the last time, about 5 years before he died. I remember him as a kind, witty man who always had a smile and something to say to me, but other than that I do not remember much of him. When I was at his funeral, I remember looking around the crematorium and seeing different levels of grief. This to me is where loss is very subjective, the closer you are to the loss the more you will feel it, and the more it will affect you. Its how you deal with it and move on that are important.
My great Nan was a bit of a different story; she had been suffering with mental deterioration for the last few years of her life. I loved my great Nan, I remember seeing her once or twice a year when I was growing up. She lived above a shop in London and was your stereotypical great old Nan. She used to be so warm and friendly and always was happy to see us. I remember how she used to give me and my brothers goody bags to take back in the car with us, for the journey home. Those were the happy memories of her that I have. Sadly, the last memories I have of her were of her in her room at her nursing home, she was being well looked after, but she wasn’t the woman that I remembered from my childhood. It was sad to see her deterioration, because the last time I had seen her was at her home, she was pottering around and lucid, and not the old lady that sat in front of me on that day, not really remembering who I was. I suppose thinking philosophically about the situation that this made losing her a bit more bearable as you could take comfort in the fact that she was no longer suffering. In reality though the news of her death still had a large impact on me. I was at college and I think it was my Mum who phoned me to tell me. The news hit and me and I absorbed it and dealt with it. It made me sad but I knew that Nan would no longer be suffering and that she would at last be at rest, but I still knew that I would never see her again. I did a pretty good job of suppressing the emotions that I was feeling until I was asked by a friend why I was quiet. When I told her that my Nan had died, it hit me and I could feel tears running down my cheeks. This luckily has been the only time that true loss has hit me and I have outwardly acknowledged it and it has affected me in a direct emotional response. Again however time has given perspective and healing qualities. My Nan is still gone, and that isn’t going to change, but I have the memories of her in her flat, and in the back of the shop, in my mind she is sewing dresses, and making cups of tea, and sitting in her big armchair, talking to us and asking us about school and the things we had been up to. The loss is bearable, and I know that it has changed me as a person, made me more able to take the larger view of the picture…
There is one other type of loss that I want to talk to you about if you are still with me? That’s the loss of friends, and I don’t mean to death, I mean the loss of friends due to time and geographical distance. Friendships are some of the most complicated things in existence, for many reasons, but the loss of is always easy but never pain free.
I have had many friends over the years, and sadly have lost touch with a great deal of them. I’ve talked about this in my other post, The Comedy Of Growing Up.
I think that it is the degradation and eventually loss of these friendships that is the saddest and potentially the most painful. In terms of analysing the effect of this hurt, it isn’t the harsh hit of someone dying, it is more of a slow gnawing feeling of sadness that eats away at you for much longer, until one day you either forget or meet them again.
However this statement is pretty inaccurate, I know from experience that you never truly forget a friend. When someone has been in your life, either for long enough, or in a concentrated amount of time, enough for you to let your guard down and become good friends, how can you really ever forget them? It is like they leave and indelible mark on your soul that will never truly be erased. It is these moments of loss that test the mettle of any friendship. If you stay in touch over the years then it is a solid friendship that deserves to stand the test of time, again time is a good healer, and you can get over it, but as long as the friend is alive, you will always wonder what they are up to, how they are or if they even remember you. I also feel that with social networking it is taking some of the lessons of loss out of friendships, but I have talked about that before, so I won’t bore you with it again!
I think also that age has a lot to do with how we experience loss, it is only lately that it has started to make me think. I am not sure if it is definitely age, but I think it has a lot to do with it. I have met and befriended and lost a lot of people lately, and it starts to make you question the futility of human relationships. Don’t get me wrong, I am not a cynic and I am not depressed, but as soon as you let your defences down and let people in, they leave, or you lose touch and then you move on. I am aware that it is human nature and that it is more than likely a hard wired survival mechanism, but it is one that doesn’t lead to a happy blogger!
I reckon here is probably a good place to start to sum up this ramble, don’t you… I think that loss is a good mechanism of making you appreciate the present, which becomes the past, more than you perhaps do. If loss is in the back of your mind now and then it makes you conscious to make the effort to make the present as good as it can be, as you never know when you might lose the situation or person or object that you are in the present with. Loss also makes you appreciate the past, makes you remember the happy times more vividly and makes the sad times duller in detail. I am almost certain that anyone remembering the loss of something or someone will remember happy times they spent, rather than the sad ones!
Loss also gives you a good grounding for the future. Without loss you have no emotional landmark to judge against, you have no way of knowing what it feels like to lose, and therefore no appreciation of what you have got, and more importantly what it has the potential to be.
I would like to think that loss has a bearing on all of us and shapes our characters for the better. I would say in my case it has helped me to grow and see the larger picture and not to get too hung up on the smaller aspects of the whole.
My words of advice, for what they are worth would be, loss is a strange old thing, try not to let it swallow you up, deal with it in your own way and time and try and remember that something or someone is never truly lost as long as you still have the memories…
Sunday, 15 June 2008
Just Because...
Alright there...
Well here is the next one, not sure what I am going to tell you about but I bet you it will end up being a good one, or perhaps a rambling mess... Can you tell yet??
I'm writing it because I've spent the evening thinking I should be writing something, and after chatting to my new PA, I feel compelled to. Mainly because she spent ten minutes telling me I should! Funny isn't it, only met her once before this weekend and she is already telling me what to do... What does that say about me? I don't want any answers from Freud either!
There is nothing particularly interesting to tell you at the moment. Nothing too major has happened. So I'll start with a brief update on the assessment mentioned in the last post, "A review of me..."
The social workers started to act all heavy, throwing their weight around. However I, being the sort of chap that I am; eloquent and argumentative at times, wrote them a letter back. I pointed out that some of the criteria had the potential to be breaching human rights, and I name dropped the local MEP, lashed on a bit of hostile, yet nonthreatening tone, and guess what? Not heard anything since... Just got to wait now to see if they are regrouping or backing down, I really hope its the first, I'm a lover not a fighter!
(Despite the shell, I am pretty soft inside, as most who know me would testify)
The new things to tell you are far more light hearted in their content. I went to London last weekend to see the Foo Fighters in Wembley Stadium. I have to say that they were really good. I have some videos on youtube if you fancy a look, www.youtube.com/russellsmith83, however the most interesting part of the weekend was the Sunday. I had a little adventure in London with my brother. We conquered the underground in my fairly hefty electric chair.
Actually the underground can be my talking point for the next few minutes. Hopefully Boris will be reading this, and perhaps can make a change, or ignore me, I don't mind really either way... The underground has some accessible stations for people such as myself, who dare to be disabled. Its nice of them, because really, we shouldn't be allowed out in society should we. Anyhow they have these stations that are ace. They have lifts down to the ticket offices, and then on down to the platform(s). However there is a problem. The platform height, to train height difference. The difference is such that my chair could never have made it of its own volition, as I approached the train, the foot-plates scraped on the train floor, it was that high. Luckily I had the aforementioned, rugby player sized, brother to act as a decent counterbalance to flip me up onto the train!
(I can almost picture you there smirking as you read this, you know who you are!)
Anyhow, I am sat on the train, on the circle line, great name for a rectangle track, and I can see people thinking, "eh, how one earth did he get down here?"
I smiled back in a, "wouldn't you like to know the secret" kind of way. It amused me to see their puzzlement.
After sitting there for a bit watching signs come and go, and my brother talking about the tube bombing, a thought hit me. I thought to myself, my chair can carry a lot of weight, and has a lot of hollow tubing in its design...
So after about 20 minutes on the underground we popped out at West Minister. Its great there, I am biased though, I love London. I took some pictures while we were there, you can also see those online, www.flickr.com/russell_s_smith, all of my good photographs are on there, take a peek! (Look at me shamelessly advertising myself in this post!)
My brother and I wandered around London most of the day, had dinner in Wagamamma's then came home! What a great weekend!
Then it was a week at work, nothing too interesting happened there to be honest, the usual busyness and repetition but nothing interesting. Except that I broke down! My chair actually died on me!!!
However thanks to the best people in the world who got me back to normal in under an hour, I don't usually name people personally but hey, this is the post to do it. Howard and Paul from physio, Paul from the technicians and Paul from Serco. You guys are ace!
Right, we've come to the end of this post, wasn't too interesting was it? Sorry, I'll try harder next time, it was more of a stopgap to fill the ever-growing void since the last post.
Oh, one thing, before I forget, talking of people, I had a new PA start this weekend, and I bet you she'll be reading this at some point, it was her harassing me to write another post. So this ones for you, with your brain stretching philosophy, constant munching on sugar filled sweet things and your over enthusiastic urge to stuff me with pancakes and tea!
Wednesday, 7 May 2008
A review of me...
Firstly this post is not an attempt to gain pity, just a record of my experiences!
I found out that no matter what I achieve professionally and academically in life, or how affluent I do or do not become, I am nothing more than a statistic. My personal feelings, aspirations and desires do not matter in the grand scheme of things. Those long term goals that any human being may have simply do not apply to me, or anyone it seems, that is in need of PA support.
Currently I lead a pretty active social life. I am no hedonistic rock and roll legend, but it isn't bad. I have friends and go out and about with them, go to the cinema and gigs, all the usual things a 24yr old does, and due to my disability causing me a few technical hitches along the way, I get to take a PA with me to sort out all the things I can't.
Sounds great doesn't it, with a little support from one person, I can lead a life that is as close to mainstream as possible, within the confines of a disability. That's how it has been for the last four years, and hopefully how it will stay... However after today's meeting, that might not be the case.
Today's meeting threw up some rather interesting, judging, questionable and concerning points. It seems that my quality of life is all down to the funding and eligibility criteria that are available at the current time! I'm going to start from the beginning so you can see the whole background, and judge for yourself whether you agree with me or disagree with me, as always your comments are welcome.
When I first moved to Coventry into my flat, I was, like all new home owners, skint! I decided rightly or wrongly that I was going to use some of my disability benefit to contribute towards the cos of living, until I found my feet so to speak. I did, and it was all working out well, I had some PAs which were funded by the local social services and Primary Care Trust (PCT). Life was peachy and it all worked, I was living the dream, and independent disabled person, living in their own place and in gainful employment.
Now this continued for a while, until I was strongly advised to apply for funding from the Independent Living Fund (ILF). This is a fund that can help out social services and PCTs with they costs of a care package (what they call your PAs).
Now the catch with ILF funding is that you have to make a contribution. They assessed this for me and at the time, as I mentioned earlier I was skint! Now I can see quite fairly, that the contribution is covered but the disability benefit, but this was contributing towards the cost of living, so I declined the offer, but was willing to re apply when I was earning enough to be able to contribute. I didn't see the point of contributing for support in a home that I cannot live in because I can't afford to live there! So as I said I declined the offer. Then time passed and back then was suddenly now.
Now is a different story. I am working full time and can afford the contribution that I would be required to make to the ILF. However there is a small problem (that I am waiting to hear the resolution of, but it doesn't look good) and that problem is something the ILF call the three month rule.
The three month rule is something that the ILF instigated, I assume, to stop authorities making claims just because their budgets are running a bit low. In a nutshell the three month rule is this. If an application is made by an authority to the ILF and it is turned down, or is refused by the client, or doesn't come into place for whatever reason, you have three months to re apply. After that three months the ILF is very unlikely to be willing to fund anything because it sees the fact that the social services department has paid for the last three months and says that this is a commitment that the Social Services department has made to the service user (me).
So as you can imagine with my application over a year and a half ago, the representative from the ILF said it was doubtful, and that they would have to check with their manager. If a contribution from the ILF doesn't materialise I am going to have problems!
I asked the killer question, what happens if the ILF funding doesn't come through? What happens to my current care package?
Let me tell you I wasn't too happy with the answer.
If the ILF funding isn't available, then my current care package will have to be reassessed against the new eligibility criteria. Currently, Coventry social services are only funding the "critical" and "substantial" needs. Neither of those categories include any type of social life.
As you can imagine this is not a prospect that fills me full of optimism and cheer.
If there is very little support available to me at the weekends then how do I maintain my current lifestyle. Through no fault of my own there is the potential of me being forced to stay in at the weekends because there could be a bedtime curfew. If you only get assessed as having a critical need that means you need to be helped into bed, that will have to be done before 10pm as that is the end of a "care" day.
I don't think this is going to work do you??
So that is the position I am in at the moment, waiting for a decision from the ILF and if that doesn't turn out in my favor, waiting for a reassessment of my requirements where I am going to have to fight tooth and nail to keep the current level of support that I have to enable me to maintain as near to normal lifestyle as I can...
Now you know where I am currently, I would like to tell you the other bit, which if you pardon the expression, was the real kick in the balls.
The irony of this whole situation is that currently the government has a drive to get all the disabled people it can, who are capable, back into work. This means that I am a "priority 1" when it comes to Monday to Friday funding. There is no end of support they will give me to enable me to stay in work. I am fully supported from the moment I get up to the moment I go to bed, and even overnight, Monday to Friday, because I am working.
However when it comes to the weekend, the part of the week all working people look forward to, I am left with potentially no more support than the basic necessary help. That means no matter how well I do professionally in life, the opportunity for me to have a normal healthy social life is snatched away...
The biggest thing bothering me about the whole situation is the blase attitude that people in authority have for disabled people. You must forget when you read this that I am a person, with dreams and aspirations. I am merely a statistic, a cost to the local economy, who is judged by eligibility criteria. It doesn't matter that we have feelings, or that we may want to do something with out lives. If the money isn't there we have to get used to the fact that we are expected to go to work, contribute financially to society, but not to contribute emotionally or socially.
To me it seems that the old adage is becoming more and more true...
"A disabled person should be seen and not heard"
or is that a child......
In certain eyes the same thing?
Thursday, 1 May 2008
The Comedy Of Growing Up...
Right, I think its about time I addressed the issue of growing up. Its a rather funny state of affairs, and it seems to happen completely differently to all of us, which I know is stating the obvious but bare with me...
I've reached a time in life, as a twenty four year old where things are starting to get interesting in terms of catching up with old friends. We've all had a few years now, most of us out of education, to sort out lives out a bit and start to have careers.
As I think I have already told you, I grew up into a college lecturer firstly, then a facilitator, then a technician, and finally a researcher, ending up with just the three jobs, Lecturer, Technician and Researcher. Now I hadn't planned this at all, I got a call, and being disabled and out of education had nothing better to do at the time, so it developed from there. Not particularly interesting I grant you, but its the truth, not all life is rock and roll....
However, today I bumped into an old friend on the train. I've not seen him since we were both about twelve. He too has a disability but that's not particularly important to this story, except for the fact that it leads us to the third character in this tale, also with a disability, who is the most interesting!
The guy on the train, Hayden, has grown up to be in a band, they are pretty good, not seen them live but heard them online and I was suitably impressed. Anyway, on the train he didn't recognise me, not to worry I introduced myself and it all came flooding back to him, poor chap. It was after the pleasantries that we got on to reminiscing about Lee. I've not seen him since school, but Hayden has as he lives in the same street. Turns out Lee has become the UK's only disabled wrestler!! How utterly bonkers is that?!
I am all for pushing the career path, and stuff like that, but it lead me to think, hmmm, funny how we all grow up. People you were good friends at school with now have entirely different lives, and move in social circles you probably would never fit into these days. For example, the three of us lads had two friends that spring instantly to mind, Gemma and Alice. Gemma has grown up to be a doctor, and Alice is another musician. Now I can't imagine that Gemma and her lifestyle would fit in anymore with a bunch of musicians and a wrestler and me, strange what time does to people...
(Now I will admit mid post here, that I am not entirely sure where this rambling mess is going, so I'll forgive you if you turn back now! If you stay however it might get interesting, no promises though...)
I know people change, we have to, its part of maturing, but is change always for the better. Is the change actually us wanting to change, or is it us changing due to the environment we find ourselves in, changing around us and we find ourselves needing to fit into it?
A good casing point would be my job at the moment, I have been teaching and stuff since I was twenty. With a teacher job, comes a certain amount of responsibility and the need to be sensible. Now I am no way saying that I am a perfect teacher, this is just what I have noticed.
I started pretty young, and at twenty I was responsible for teaching GCSE media to students. This meant that I had to keep a boundary between me and the students, which meant that in reality my new friends were the other lecturers at the college. All of which were much older than me and had been teaching for ages. Ninety percent of them had sensible grown up lives, with families and all the trimmings. This meant that I was in an environment where I had to grow up fast, and do a good job. I'm not complaining, it was a good experience, it made me the person I am today. It just makes me think, you can't un-mature, so what happens if you want to go back and do some of the things that you'd used to have done. It just won't be the same. People move on, names and faces change, and no matter how good it is in the present, it seems that a few years down the line, you always seem to be looking back with fondness. I'm sure all of you reading this have memories of a friend or colleague you got on really well with, and now and then you wonder what they are up to? You perhaps don't have a number or address for them, but sometime you think of the good old days, and would like to get in touch.
No..... Just me then.....
(Ah ha, its evolved inside my tiny brain, I know where I am going with it, hang on...)
I think that this feeling of missing people, or remembering the good times or bad times or whatever is surely a good thing. It means you feel happiness or loss, it means you have emotional ties to people. That sense of "ah nice one I just found so and so on facebook, not heard from them in years..." is a good feeling. You are remaking the emotional connection.
These days though, and I am thinking particularly of my 14yr old brother's generation and subsequent generations, people aren't going to have this emotional connection to others are they. With social networking so prevalent and mobile phones owned by more or less everyone, its not like we will ever loose touch. So if we never loose touch, and know that on the end of a text, call or email, everyone you've ever liked will be there, are we going to take friendships for granted? Will we loose the ability to cherish the memories of the fun times together, because its instantly documented in pictures and video on a social networking site. Will we grow up through the technological interfaces rather than in face to face situations with real life friends? Will my brother actually ever loose touch with people, like us older generations have? What happens if you never loose touch, I have no idea....
You see the thing I have noticed over the last few years is that as people move on, it is then that you can really see who are your true friends. Fair enough you have 200+ friends on facebook, but are they real friends? Do you know how many of those you could not see for years, but it be like you'd never left off next time you see them? I'd hazard a guess at not many... I've learnt that a lot of the time friends are very present tense, I've got loads of friends at the minute I think the world of, and we have a lot of fun together. However if that frequency of seeing them diminishes it all starts to unravel... Its after the gaps that you know who your true friends are, and with social networking I think that its going to get harder for people to distinguish...
Right that's all I have to say for now on the subject, I need to think more about it and get back to you, which I will on due time, with a different colour font for the new bits! Reply to this one if you will and let me know what you think, I'd be intrigued to know.
Sunday, 27 April 2008
The first post...
Well, thanks for looking!
Right, a proper introduction and hopefully a session to cover some of those things you always get asked when you first appear on the scene, so to speak.
Oh, let me point out from the outset, I am not a professional writer, I make typo errors, the odd spelling mistake and the grammar might not be top notch, but you'll always be able to get the gist of it!
First off, because its the most common talking point, and I'd like to get it out the way, lets talk about my minor inconvenience, muscular dystrophy.
Its not as bad as it may first appear to the casual observer. Yes indeed I have an electric wheelchair, but its pretty good.
Congratulation to Sunrise Medical, their Quickie F55 is pretty good to be fair. I have taken it on beaches and up large mountains in Dorset and battered it around when I have been slightly under the influence of alcohol, and for the last 9 years, it has only let me down properly once, when a wire came loose and left me stranded in the dark and cold of a January night!
But it wasn't that bad in all fairness, I rang the Disabled AA, my reliable repairers, SERCO and within an hour or so I was up and running again! Good stuff!
Secondly, yes I do lean to the left, its called scoliosis, its no biggie, it means the muscles and the bones aren't quite right. It doesn't hurt, it doesn't mean I am and more retarded for not sitting up straight and if gravity wasn't around it wouldn't be so bad! It also spawned my nickname, in certain circles I am "The Bendy Avenger".
Also while we are on the point of my physiology, its odd, but not particularly interesting once you know how it works, so here we go, in fairly simple terms because I am not a doctor and in reality it doesn't interest me that much...
Muscular dystrophy is a general weakness of the muscles, usually it is a progressive disease.
The prognosis for most MD lads isn't too bright, if you have Duchenne then its pretty dire, you'll most likely be dead by 30, sorry but thats the harsh reality of it. All of the other types have a life expectancy from middle age to average, if you are particularly interested you can look at google for the answers.
With all that doom and gloom though, mine is a bit different. The situation might have changed recently, because I was told this about ten years ago, but back then, the consultant, said this to me;
"...we aren't sure what sort of Muscular Dystrophy you have, its all to do with a chemical called merosine, and you are on the very middle of the spectrum, we've found no one else with that amount".
What that meant, after some further explanation was this;
If you can imagine a spectrum 1-10, and at one end you have Duchenne, and the other you have a not so bad type of MD. Then you look at slot 5, and you divide that loads until you are right in the middle of it, thats where you find me.
This is surely a good selling point, I am a genetic novelty, or freak or unique, however you wish to look at it. I don't have a preference! The down side is that no one can give me any clear answers, they said quite flippantly once, "well if you make it past 28 or so we can't see any reason why you won't have an average life expectancy".
Lets all hold our breath around November 2011 eh!!
So yeah, sorry got a bit distracted with the back story there, muscle weakness...
My arms and legs and trunk are all a bit weaker than they should be, I can't lift heavy stuff, I can't move of my own volition particularly well, but with the previously mentioned chair, and my team of PA people, who are generally ace, the world is my oyster.
** note to self... tell the lovely readers about PAs later on! (its an interesting adventure!!)
However with all that said I am not doing too bad!
I am an average type of bloke born in 1983! I like going out with my mates, drinking, looking at pretty girls, going to gigs, and generally being daft. Just because I use a wheelchair doesn't mean my priorities in life change. I still want to grow up have a decent job, get paid loads and have a family and all that sort of thing, apart from my shape and how my body works I am no different to any other average bloke... well except I am pretty clever and have a decent set of morals and social skills!
I am living a pretty productive life, working full time, currently in an FE college, as a lecturer in multimedia and photography, a Multimedia Technician and a Researcher. I live in my own flat, and have a pretty good social life. I get drunk now and then and do stupid things, I look out for the people I like and do my best to help out my mates, I would like to think I am a decent human being!
If you have any questions, please ask, I'd rather you be blunt and ask, rather than make incorrect assumptions, as someone once said, "when you assume you make and ass out of you and me!"
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