Markinsutton's Blog

few words of wisdom

Markinsutton — Mon, 28 May 2012 16:46:28 GMT

I have wanted to be writing this blog for so long just not had the energy
or time to do it. Its been really hard to get my head focused also. Its not
often I canâ€™t express myself through words but the last few months have
been hard. This is mainly down to one person taking over my life and hasnâ€™t
wanted me to upset anyone. As you all know I am a honest person and if
people donâ€™t like me then I normally tell them to get lost. I been thinking
maybe this is why I am still single and I find it very hard to be in
anyoneâ€™s company for a long time without wanting to kill myself afterwards.
Interacting with fellow humans has been a struggle since moving down from
Nottingham. I put this down to mixing with the wrong kind of people. I
donâ€™t like doing the whole stress things about the future never have done..
I consider myself lucky to just be alive. The last few months all I have
heard is benefit cuts and disabled people hit the hardest. This has sent me
into a state of depression, adding the fact that things havenâ€™t been plane
sailing at work.

I know I must given up but trying to be considerate to others also is
making me think is it worth it? The more I think about it the more I feel
that I just need to look after myself. There are things I want to do for
other people this year, One of those is holding my 40th birthday party, I
have a great bunch of friends and I am looking forward to them all coming
however there are just a few that I shouldnâ€™t really be inviting, donâ€™t
worry if your reading this its not you. Throughout my life I have always
had an idea what I wanted to do. The concern I have at the moment is I
donâ€™t have any ideas. The only positive thing I can say I have achieve the
last 14 months for myself is join MERU, I really hoping that bubble doesnâ€™t
burst and leave me not knowing what to do with myself. I have struggled
massively with the WDS support group losing respect from some people that
has hurt me considerable. Its hard to believe I have been on the committee
for the support group for 14 years this year. I would have said that its
come a long way since the days I started but listening to the constant
attacks from people that I am not doing enough is hard to hear. Especially
when I achieved the longest distance I have walked for a very long time of
10km. this I thought was a great achievement but some feel its not enough.
I know many of you would say I shouldnâ€™t listen to those people but its
those people who effect the way things change.

I guess that I can consider myself lucky that I have been saving so I am
not struggling to pay bills at the moment but the sale of my caravan help
with this as I no longer have to pay for that. It upset me greatly losing
the caravan as it was the last big thing that I had which was mine. The
most expensive thing I own now is my Imac, there used to be a time my house
was full of nice things but now I have to save for months to buy things. My
latest thing I brought was a Tablet pc to aid in my communication and keep
me in touch with the world. Its much better at predicting what I need to
say that my Imac but isnâ€™t quite as good as the software I had for my
Windows PC. I am slowly adjusting to write on my Mac, hence this is why
this blog has been so long to arrive.

What do I do now? I donâ€™t think my current location is the right one for
me. Dorking is a nice area but its far too hilly for me and I donâ€™t really
know anyone. I also donâ€™t like public transport around here. The only
thing that is keeping me here is the council will only pay me housing
benefit to live in Dorking and that it is easy for me to get to MERU from
here also. I guess I should be happy with my current situation as it could
be much worse. I just wish I had a clearer mind on what I should do with my
life. I hate living without direction

My views of attitudes towards disabled

Markinsutton — Sun, 04 Dec 2011 18:15:54 GMT

Thought I would write a little bit on a report done by Scope this week regarding attitudes towards disabled people. I also wanted to comment on my own views on radio interview I done for Radio 5 Live on Thursday morning. I am not 100 percent sure that I am helping matters with writing this. I get so much negative response from people regarding my own views on how I get treated, as a disabled person am I only fuelling the topic?

I was trying to think this morning just when did my disability become a problem? I was born with Cerebral Palsy so the challenges I have faced as a child and growing up as made me the person I am now. Its only really recently that these impairments have become a problem for others to accept. I have had issues in the pass with employment but it has never come to the extent that I have been told that I am not wanted within the work place. Most pass employers have always been very accepting on my disability and found it has been a benefit to my work.

I have always done what has been asked of me. I have never used my disability to say that I can’t do anything. I will always give things a try, sometimes they don’t work out but until recently people have always been pleased I given it a try. Now when I try anything I just get abused and get told that I am stupid and get laughed at, worse still I get told off from work for even trying. This has knocked my confidence to go out and now I am very nervous trying new things. I also am getting nervous trying things that I know that in the pass that I have been able to do.

For example I used to enjoy going into London the buzz of so many people going on with their daily business used to give me a sense of excitement. I was able to just go on with my daily tasks either within work or social events when going into London and not to worry about that I am inconveniencing anyone else. Now it’s just an onslaught off attacks and target of abuse. This can be anything from being quested why am I parking in a disabled parking bay and being looked at and people checking to see if I get a wheelchair or walking sticks out the back of my car. To being looked at in funny way for asking for a seat on a bus. The times that I have found this hardest is when I get told to wait for next bus or train as there just isn’t room or someone doesn’t want to give up their seat for me. On top of all this I have a hearing loss and holding a conversation with someone is very hard. People are not very patient with me and will often not look at me when talking to me. I was told off the other day for jumping the queue, when I explained I was disabled and standing in queue is hard for me plus I have a hearing loss so it’s difficult for me to know who is calling for next customer .I got told that is no excuse to jump the queue and if I can’t stand for long time then I should be in a wheelchair so people would know I am disabled. I find that my wheelchair can be more disabling as I need to keep moving or I will seize up and quickly lose the ability to walk. I also find with the shops being so busy people do not get out the way for me and shopping takes 5 times longer as I have to wait for everyone else to finish before I can get pass if I am in my wheelchair.

Not being the time to complete tasks is my number one issue within work at the moment. Going back to the topic of getting into London I have been asked to attend a meeting in north London. I have been asked to attend the meeting starting at 9:30 which means I need to really plan to get their for around 9:00. I have tried to do this on a Tube before and it’s been next to impossible leaving me in so much pain the next day I had to take a day off work. I also then got told off for this, as I was then unable to carry on with my daily tasks. I have tried to get into London by car but this takes so long it means it becomes a very long day for me and I have the added pressure that I need to remain safe within the car and aware of other road users. Another additional problem is my employer has said they will not allow me to go into London unless I take other people from work in the car that means I have to start even earlier. The whole attitude that my disability is causing them a problem just makes me want to take the day off sick so I don’t need to attend the meetings. If I try and attempt getting into London again on the tube it means the hassle of trying to make sure I can remain safe and not get lost if there are changes to trains etc. again my hearing loss presents a problem with this. When asking its really hard for me to follow people. I try and rely on my phone for information using different apps but this doesn’t work on the tube leaving me very isolated. Scope where working with my employer to help me within my work and offered to find out about a buddy system for me at work. This would allow someone to come with me and help me with my confidence and sort out any problems like finding somewhere to sit down on tube or asking for help, this was rejected by my employer saying that they may as well employ my work buddy to do my job. This attitude has left me feeling I need to hide my disability as much as possible from my employer.

Hiding my disability from public view presents more problems. I have ditched my walking sticks and started to use a back brace to support myself when walking. this is a little harder for me but it keeps my pain levels down when I get home in the evening. the problems it presents is now when I get out of my car after parking in a disabled parking bay people can not see me as being a disabled person and I have found I get questioned more. I am worried that I going to get reported to the DWP as they have me registered as wheelchair user and its often now I can not use it when I am out. it means I am now in constant pain but this is hard for people to see. I Really do struggle to get out of my car if I can not open the doors completely open. by not using my walking sticks or wheelchair people judge me as been a benefit cheat and not entitled to use a mobility car. if I use my wheelchair or sticks the abuse just carries on both from the public and my work and I am stopped from doing things that I know I can do just given a little more time.

fitness to work assessment went horribly wrong

Markinsutton — Tue, 08 Nov 2011 18:06:16 GMT

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Nothing could have prepared me today for what happened. I knew this fitness to work assessment was going to be stressful, I just could have never imagined just how so. I arrived into office at 9 o’clock as requested by my employer. I was then greeted by the man who was assessing me from occupational health he wanted to go through a form on my levels of fitness and my mental ability to work. He told me this was going to take an hour and half. I explained I didn’t have the time to do this as I had to be with a service user by 10. We talked a little in the car on the way to the service user. I didn’t really trust the guy that much and was very worried about giving anything away that could be used against me.

On arriving at the service user I was pleased to see he was standing to one side and not trying to distract me by asking questions as I was working with Service User. We all went out to town to look at different shops and it was quite difficult for me as I was trying to make sure that I was not giving him any concern to make me unfit to work.

After finishing with the service user we stopped at Tesco’s to get ourselves some lunch and a drink. While sat in the car he wanted to go through some of the assessment form, I wasn’t over happy with this as I knew just what was waiting for me in the afternoon group session and thought it would been good just to sit and not talk or do anything. Having a hearing loss having to listen to someone is quite tiring and with him not being English either made it even harder to understand him. After 30 minutes I said that I needed to go and I couldn’t answer any more questions.

Time was about 1 o’clock now and I was heading off to my group session a few miles from our location. Around 1:15 he told me he started to feel dizzy and could he have a drink of water. I handed him my spare water bottle in the car. He said he would like something with sugar in it. I asked if he was diabetic he said no. I didn’t think he was looking too great. By 1:25 he was really started to worrying me as he wasn’t responding to me. I quickly stopped the car next to a shop and ran in to get a sugar drink as it did seem like he was suffering from low sugar levels as a diabetic, he couldn’t sit up and wasn’t really able to talk to me. kept saying he felt dizzy, light headed, place spinning. I quickly shut the door and drove off the main road around the corner to centre that I should have been working at asked them to dial 999 as I have a man in my car that is seriously ill. I explained that I wouldn’t be able to work with my group just yet as I need to make sure he is ok. Two members of staff came out with me and he didn’t look well at all. The time now was 1:30 he had got much worse and wasn’t able to sit up in my car and was lying across the seats semi unconscious.

Lucky for me the ambulance centre is next door to the day centre I was due to work so they were on the scene within 2 minutes. I didn’t hear what the paramedics where saying to him or the manager of the centre who came out to see what was happening. All I know is they have taken him off to hospital now. He wasn’t able to get out the car on himself and wasn’t able to stand so the paramedics took him on stretcher into the back of the ambulance.

I guess this begs me to ask the question is my job so difficult I have worn the poor man out and he has ended up in hospital? I know when Scope came to observe me they also found my job very exhausting and hard to keep up with me. The other question one has to ask who was really fit to work? The most frustrating thing for me is it now means I will have go through the whole process again. I really hope it’s not the same person as I had to do a lot off running back and forth from the car.

What was also quite stressful is after all this has happen and by about 1:50 I had to go back into the centre and carry on with my group session like nothing has happen.

Talk about a long day

Some of my Barriers to Communication

Markinsutton — Mon, 31 Oct 2011 11:35:31 GMT

Barriers to Communication

Someone recently asked me what are the barriers to communication? Well I going to knock myself out and tell you just what barriers I face and how they affect me on a personal level. I may also touch on other barriers that don’t affect me but I can see causing a problem for those I work with.

Communication has always been my biggest barrier in life and one that I have struggled to overcome since a little boy with no speech. Growing up I found that speech is only one part of the barrier and really hasn’t been the hardest to overcome. Most of what we say is total rubbish anyway and I have communicated better with people around me without the use of speech. Before I move on to methods I use as my communication I thought it would be good to touch onto the barriers with speech.

Speech and the spoken language! The real problem with speech is the speed it works at, there is no delay or time to correct what you have said. Once you have opened your mouth and started to speak a word, you have already expressed so much information. Someone like me who has a problem with speech this becomes even more difficult. Take a simple word that most would open a dialog with another person, “hello” first barrier for me is remembering to swallow so I don’t end up choking on my own saliva when I open my mouth, worse still end up dribbling what saliva down the front of me that will portray a whole different message to the person I am saying hello to. The next barrier is just how I say the word. Tone, pitch and volume are all concepts that having a hearing loss are alien to me. Most people say that I have a London accent but understanding accents and how people talk is another barrier I do not understand. When do you say “Hello” and why, does the person really want to make conversation with me and if so why? Should I reply with a hello back, what do I say next? Should I ask “how are you?” you get the picture. The spoken language has a whole set of rules that are very different depending on who you are with, where and when. I could write a whole book on the barriers that I face on speech alone but I am sure there are 100 of books out there on this topic. All I know is sometimes it’s really too much effort and is hard and complex form of communication to manage within the spilt second you open your mouth.

Written language, there are many forms of written language and I am aware that I have not touch on many other barriers of communication before talking about this subject. The reason why I have jumped from speech to written is because it’s the most common two forms of communication that people understand but is far the most common two used. For example the biggest use of communication I use is silence. The amount of times I have done nothing to portray a message across is much more than any other form of communication I use and is much more effective than trying something else. The biggest barrier to me for me and most people with the written language is spelling and grammar. Just how do we construct a sentence? What words do we use? How do we put them together? There is also the other greatest barrier with the written language that is the ability and time to read it. If you have got this far within reading this passage on communication you are doing well. I am one who likes to write as I find it gives me time to express my ideas and thoughts onto paper. I also feel it can be the most effective form of communication. You only have to ask William Shakespeare that!

Another barrier with written text is speed of trying to turn it into spoken word. In my experience this has never worked. AAC devices are great for expressing your needs and wants but that is pretty much about all. Having a conversation via an AAC device is next to impossible to do. The speed which one can input text and translate that to speech is far too slow. This is something I have noticed being chairman of a charity that supports children with AAC devices is becoming easier with new technology but still has a long way to go before it can replace speech. There is also the biggest barrier with the written form of communication that is the ability to read it. There are so many people today that are unable to read this is why most of my blogs and emails I send in audio format as well. The age of texting (SMS) messages has made this worse in my view as people have tried to cram in too much within a text message and information gets lost along the way. Text messages have opened up a whole new world allowing us to communicate on a much more equal level but presents a whole new set of rules and barriers within its own way.

With just touching on those two topics of communication I want to highlight a few more barriers. Some are linked to what I have just written so sorry if I repeat myself. As I have said I have a hearing loss and this presents a problem. People can’t see deafness or the understanding just how confusing it is for me and others to have to try and process the sounds we have heard into a sentence, and then translate that into a reply. Even those who know me best and have a great understanding of deafness I found to be the worse to construct sentences that I will be able to understand at the correct pitch, volume and tone. Putting too much into a sentence leaves me confused and having to ask again as I am still trying to process the first part of the speech before being able to process the second part. It’s not that I haven’t heard them just I cannot concentrate that long to take in all the information, like I have said speech is a complex language structure and having the ability to understand that when you have a hearing loss just makes it so much harder. There are many factors that can affect this. The environment is the main one for me. This is the case for most people with a hearing loss or not. Try and listen to a conversation when you have a lot of background noise or lots going on around you, It’s very difficult.

This brings me onto a form of communication I have found to be fairly affective for me but presents so many barriers it not as good as it could be. That is the ability to use sign language. Sign Language is very expressive and personally I feel has a much simpler grammar structure to it than spoken or written language. The barriers become known when there is no one who can sign around you. The ability to form the hand shapes for you to form the complex signs. My motor skills are very poor I prefer to watch sign language more than sign myself as it gives me a much simpler view to what has been said to me. There is also the normal barriers of having the ability to see the person also understanding their own ability to sign. Unless you get a professional interpreter sometimes it’s very hard to follow someone who is using sign language as mistakes are common. The other part of using sign language over other forms of communication is the heighten awareness of gesture and facial expression.

Body language is one of the most true forms of communication I find as people say so much with their bodies and don’t even realize it. This presents a whole new barrier as it is very confusing to see someone say one thing and then say a different thing with their body. People often lie with what they say but find it very hard to lie with their body and facial expressions give it away. I use this a lot but it leaves me feeling confused and isolated as I don’t know if what I have heard is what the person is saying are the same thing. 90% of my work is working with people who have little or no verbal speech and little or no hearing. Not having the ability to understand grammar and English they us gesture and facial expressions to communicate their needs and wants. I have found my best conversations have been with these people who use this form of communication that demonstrates to me the more complex you make communication the less affective it becomes..

pushy sales people taking advantage

Markinsutton — Fri, 09 Sep 2011 16:18:55 GMT

I am not writing this on my computer so I going to apologise for my English or spelling as I don’t have my software installed to check my writing. I keep apologising for my English but really I seen a lot worse than mine, anyway I feel it is time to write a few more thoughts down. Things are changing a little more at home. I want to record my life in a blog much more than I do but it is really hard as times I really want to write something I am in such a state I can barely look after myself. By the time I have recovered enough to write anything down the moment has passed and I don’t feel the point of writing stuff. This makes it really hard for me to know where to start when filling you all in with latest things.

I guess best place to start is I have now been given a start date to return to work, this will be next Tuesday the 13^th September. I have had a return back to work meeting yesterday and attended a staff meeting which was good. The next month or so I have been told just to observe other staff and not get involved with anything until an OT assessment has been done. I am still struggling a little with my mobility getting out my wheelchair has been hard work. It has been 2 years since I have used it within my work place. I can really only us it when I am out and about shopping, I think I am coping ok.

My back is hurting a lot because I can’t walk straight, it places a great strain on my back. I had a call the other day from a company who said they would offer me free massage treatment. They wanted to come to my house. I wasn’t sure and I hate to say no to people. Anyway they turned up and I explained that I didn’t have any money and that I was having problems at work so finance is very difficult for me at the moment. The lady didn’t take any notice. She went on for 3 hours on how this treatment would help me both at work and at home. Basically she was trying to sell me a massage chair costing £5000. I was getting really worked up and even with her giving me a massage my pain killers where wearing off and I just wanted her to go. I could hear all my friends in my head saying “No! Mark don’t sign anything, you can’t afford it” I knew this was true. I was also really desperate for my back pain to stop, it was like she was offering me a life line to make it all better. Of course I didn’t know if this so called wonder chair would benefit me at all. All I knew was I wanted her to stop trying to selling me it.

I had a brainwave! I knew I had identity protection insurance that notifies me if anyone gets finance in my name or does a credit check would block it. I was thinking that any finance agreement would have been refused by them therefore if she phone them it would be refused. To my horror it went through. I was like “oh crap, now what should I do?” I didn’t really feel that I had a choice but to sign the agreement and keep her happy. I was really tired by now and needed to eat and take my medication. After she had gone I broke down crying, I was really upset with myself that I couldn’t stand up for myself and say no. It is not that hard to say no is it? I was also facing the future that I now had this £5000 chair to pay for. I know it’s very unlikely I could afford it. I didn’t know what to do. What also frustrated me is I don’t know where she got my information from and she knew I suffered back pain from a survey I completed. She wasn’t able to tell me who gave them this information only that I was on a database.

Reading my tweets on twitter Scope contacted me to offer me some support and advice. They were very good and listen to me. I was a little worried, I was still quite upset about it all and that I have let myself down. The lady from Scope told me not to be too hard on myself as it could happen to everyone and that I could easy cancel the agreement. These people are sales people and they will be pushy for a sale, it is how they get paid. I felt a little better but also felt a little disappointed that I knew I wouldn’t be getting this massage chair and that I just have to carry on with dealing with my back pain. Scope again has been very helpful again with this as I have been struggling at work they have been supporting me with returning to my current job. I have been off work now for 4 months because my employer refuses to believe that I could do anything within my job safely. A Scope representative came with me to a medical assessment last month who passed me fit for work and could not see any reason why I shouldn’t be allowed to do some of the tasks at my job. Scope agreed and they have already have done an observation and report on me that got handed to my employer who came to the conclusion after reading it that I am not fit to work and signed me off sick refusing me to come back into work. Scope has been helping me go through a grievance. I am glad to be allow to return to work, there is still a long way to go but I am hoping that I will either find another job or things improve within my current job. Either way I am really glad I have the support of Scope behind me.

I have had Cerebral Palsy all my life and I don’t think I have ever experience such hostel attitudes towards me. It seems that people think that disabled people have loads of money and that can afford anything. The sales person for the chair was questioning me about couldn’t I use my benefits to pay for the chair. When I told her I work she said well, you still get DLA don’t you? I said yes but that goes towards paying for my mobility car and cost of petrol. I also hate the way my employer seems to think they can cut my wages and I can just go on benefits. I don’t know where this attitude has come from. I don’t get any more help than anyone else does. Just because I am disabled I cannot afford expensive things, in fact I cannot afford much at the moment.

Holding down a job as a Disabled Person

Markinsutton — Thu, 25 Aug 2011 10:28:17 GMT

I am sat in front of my computer wondering just how I going to word this. I was hoping after a nights sleep things would be clearer this morning but after more disappointing news through the post this morning it’s just sent me into a deeper depression. I swear its becoming harder to be a employed disabled person these days. I really do feel for those who are disabled and trying to find work as this doesn’t come to good news for you. My disability allows me to pretty much do anything without anyone noticing that I am disabled, Sure people look at me and they think there is something not quite right about me but on a whole I can walk, talk and do stuff that any other person can do, if not more. So being told you can’t do a job because you are disabled it is really hard for me to accept. This is more so when every medical practitioner say’s I am able to work. I have no problem with being written off by DWP as unable to work, but that never going to happen! I can even handle with being called a benefit cheat by those who don’t understand my disability. What really is bugging me is being court in the middle. I have no desire to do a job that I find frustrating and tiring. We would all love to do jobs that we enjoy doing, I can do my job and do it fairly well, not because I have been to college and learnt all about it, no. I can do my job because I spent most my life within the social care system. I know as a service user how it feels to have to ask for help from a personal assistant or social worker. These are qualities I think are the most important within my role as a social worker/life skills coach. Its just a shame my employer doesn’t think so!

I had my first paid job in social care 11 years ago after losing my job as an engineer. I enjoyed working with liked minded people who were deaf and had other impairments. My sign language skills are not great due to my own Cerebral Palsy but I was able to make myself understood by most people, some people even thought I was profoundly deaf because of my style of signing. I left that job after 3 years because of differences between myself and my manager, I should have stuck it out but she was making it very impossible for me to do my job and standing up for the rights of disabled people. The real question comes is why did I return to social care work 2 years ago when I knew that I was not accepted within that field of work in the first place? You maybe thinking the same as me, not all companies are the same. It did seem like this when I joined my current job. I even told them why I left the last job in social care, they agreed and said “oh we don’t work like that, we are much more client centred” this sentence is the biggest load of bull shit I have ever heard in my life. A few times I have seen it work within my job over the last 2 years but more or often its just how can we get the service user to do what we want to do. it goes against everything I believe forcing a person to do what they don’t want to do. this has lead me into a few mistakes. One primary one really. that was allowing a service user to go out without his walking aid. I not going to go into details but it is this which now my employer is using against me. They are saying I am mentally unable to make choices and will willingly put myself and others at risk by going out the house and trying to do a job I am unable to do. After telling my employer about this incident I really wished they did go through the disciplinary process but they did not feel at the time for some reason the need too, however ever since have been bashing me over the head with it.

My employer seem to have it in there head that I am reckless and have no regard for my safety and the safety of those around me, this is more so the case when it comes to my safety. I have a good awareness of my abilities and sometimes I will go into work without my walking sticks because I feel that they disabled me in other ways and when I don’t need them why carry them? This translates to my employer I am putting myself at risk. I am more than able to walk and I DON’T need to use my wheelchair unless I have totally over done it and want to rule out every chance of falling over. Before anyone say’s “why can’t I do my job from a wheelchair?” I just can’t ok, there are just some jobs that are impossible to do and this is one of them. OK it could be possible but it would require a serious amount of support from my employer, something they are clearly not able to do. I have taken ever step to take control of my own health and safety within work but they will not let me. I am really close to just giving up. My relationship with my managers is very weak and they are very aggressive towards me.

Last week I got really fed up being off work now for 4 months I launched a grievance with my employer. There where 3 points within the Grievance.

Here are the short versions of my grievance

1 ) After taking 2 days off sick to get over the disappointment of losing my flying scholarship as well re-build up my energy levels is not unreasonable request and I should not have to get a doctors certificate to say that my depression and that my medication is not making it unsafe for me to drive..

2) that I should not be asked to obtain a sickness note from my doctor until an OT assessment is carried out to prove whether or not my disability is making me ill. In short I am disabled not sick.

3) It is unfair to ask me to return to work on my first day without any transition back to work also for an OT assessment to be carried out on the same day on reduced pay.

On all 3 accounts my employer feels they are unjustified. My solicitor has said it would be hard for me to appeal against the first 2, but I am likely to be able to appeal against the 3^rd. what is really strange is even though they feel that I was unjustified to launch this grievance on point 3 they have said they will allow me to return to work on a transition period on full pay as a good will jester.

Where does this leave me now? I can hardly appeal against the 3^rd point of my grievance if they have backed down. What does puzzle me is why are they making me feel like the bad person for launching an unjustified grievance, and then backing down later in the report?

I also have the outstanding issue they do not trust me to work with service users. They haven’t set a date for me to return and I have no idea just how this OT assessment is going to work. What I find a little ironic is that this all started from now a distant memory of not achieving a flying scholarship and now I have ended up more depressed by the situation.

There is one thing I have learnt by this process honestly is NOT the best policy. I really wish I haven’t told either my doctor or my employer how I felt about how much the flying scholarship meant to me. What I am also likely to do is never to tell them just how much my disability can effect me. Reason for this is that I can’t see just how by telling them it has helped me? My depression is much worse than it was, I have very little confidence I will be able to convince my employer I can do this job safely now. What I don’t really want to do is move and have to start all over again. I did that when I took a break from social care last time and moved to Nottingham, we all know just how much that helped my career, zero! The only thing I got from going to Nottingham was the friends I made, which was worth it I guess but do I want to do that again? I go back to my earlier statement, “am I giving up too easy?”

Desperate for answers

Markinsutton — Tue, 23 Aug 2011 13:52:09 GMT

Well, I guess it is that time again to get some of these ideas in my head down on paper, in the hope they make a little more sense. I find this quite hard to do as I don’t really like any of the choices I have available to me so picking the right choice is hard work and quite exhausting. One thing I have learnt over the last few months being off work is I need company. I really don’t like spending hours and hours on my own at home. It is made worse by not knowing whether I will be able to return to work. I have no idea just how much money I need to save. The cut in my wages is now eating into my savings and more or likely I am going to lose my caravan next year that I dearly love because I will not be able to pay the ground rent. The caravan was the last ascent I have left and after that I have nothing. It is the only place truly accessible to me as I was not able to get an accessible flat where I am currently living.

The fear of losing the caravan is one that gives me nightmares and not having a place I can go and relax fills me with dread. If I am going to have to face the fact its gone and I need to accept this the question I ask myself where do I live? I know I can not manage on my own at home and I have zero support around me. Unless its an hospital appointment or I am seriously ill my family are normally no where to be seen. I have really learnt the importance of family the last week being surrounded by a loving family and a sense of belonging, respect and looking out for each other. It was quite refreshing to see that family values still excess. This has opened up a few idea’s in my head which I am unable to process. The first being the most difficult for me to come to terms with as it doesn’t match with my understand of life. This being the first time since leaving school the only time I have felt part of any family is the family of god and the church. Religion is a hard one for me to accept as for me it isn’t about what I can benefit from it but what I can do to give to others. Every time I listen to someone talk about religion they talk about how as human beings we never achieve enough to make god happy and we must do more. It talks about how we are not worthy to receive god because we are all sinners and any man who denies that is a liar. I first joined a church because I wanted to give back to the community but now I have given everything I have I feel that I been left to defend for myself. I fear that I have grown to resend giving so much of myself away to others. This leaves me feeling confused and upset as I know I do things out the goodness of my own heart and I never expected any thanks for doing them, so why does it leave me feeling rejected by god’s church?

Another thing that leaves me feeling confused and unable to compute is just where do I belong? Every time I turn a corner I get walls and barriers put up in the way. This is more so with work, I really hate feeling that I am unwanted, I know I can do my job and give a real sense of achievement to those who I work for. I know I am not stupid and the little knowledge I have I can pass on to those who I help. I may get stuck along the way sometimes and I beg for help but instead I just get told to go away. Dealing with this on top of my own disabilities is making it next to impossible to understand my options.

Dealing with my disability. In the pass I have always rejected my disability and never even considered it would stop me from doing anything, after all why should it? Its not a problem for me so why should it be a problem for others. Being around people who do not know my disability or consider it to be a problem the last few days makes me think that I don’t need to make adjustments for it just because someone tells me that I have too. As a child every time I said I couldn’t do something because of my disability I got a good kick up the back side and told to just get on with it. I finding this transition really hard to deal with because there is no one there to help me.

Where does this leave me now? A very good question! I could just get up and leave my current job which is going down the drain much quicker than I expected, But where would I go? Is there a much better place for me. A community that would accept a hard working not so young man? Is this running away from my problems? I thought long and hard before I moved to Nottingham 7 years ago, did I give up too easy by moving back to Surrey. Would things change if I did it again and move some where else? I am so desperate to move somewhere or anywhere am I giving up too easy on what I have here at the moment? I am not sure that I am accepting my responsibilities, do my work have a point? Am I thinking I am better than I really am? I have lost a lot of confidence the last few months and I don’t believe there is much I can do without facing the abuse thrown at me by other people. It hurts me so much be told you can’t because you are stupid.

The Strongest will Suvive

Markinsutton — Wed, 29 Jun 2011 10:23:00 GMT

Had an escape day yesterday, spend most the day reading Toys by James Patterson. This isn’t why I writing this blog. I was hoping after taking my mind off things it will help me have a clearer understanding on what I need to do. I am have to face many changes within my life at the moment with the welfare system all changing it really is effecting me, to be honest I am scared.

So, where am I now? I have always wanted to work and thought that I would work. I never really gave it a second thought. I knew many people with my form of Cerebral Palsy didn’t work. If it became too much for me I could get help from the government to support myself. My real problem is first I have to get other people to accept just how disabled I am before anyone will help me. All my life I have hidden my disability from public view. I am not proud of the things I can’t do, I really hate asking for help. This fear of asking is something I fear because growing up I was always turned down for help. It takes so much courage for me to ask for help as I have to admit that I have a problem in the first place. It doesn’t take much for people to knock that confidence, and then I will go running away and start again. I have done this 3 times in my life so far. Starting again from square one is not always the best option but I find that I am able to show people just what I can do without them judging me for the weaknesses I have.

Having to prove myself to everyone if this is work or at home is not easy for me but the moment people see any weakness that I can’t do something they use it against me. I have seen this so many times in my life. They say it’s because they care about me and don’t want me doing stuff that is hard for me. Rather than support me to do whatever it is that I want to do, they will trample all over me to achieve what I can’t to make themselves look good. You know what they say “the strongest will survive” I would like to think I am a strong person, I am most of the time apart from when it comes to my disability. I spend so much energy to stop it controlling me and taking over my life I don’t have the strength to fight anyone else attacking it either.

Quite often in my job as a social care worker we talk about empowerment of our service users. It’s a statement I believe in very strongly. The problem is no one is empowering me to do it. The government have said they would like more disabled people to work but just where is that support? I went to Citizens advice Bureau yesterday to see just what help I could get. The man there was just totally lost on just what my position was and couldn’t understand why a person as disabled as myself was being put in a position to work within a job that it seems from the outside that I am clearly unable to do. The last few weeks I have been asked the same questions these are those questions.

1) Why are you no longer using your wheelchair?

My employer will not allow me to use a wheelchair within my job, they believe the job would be impossible to do from a wheelchair. Without additional support that would be unreasonable they would not allow me to try.

1.1) Do you think your job is possible to do from a wheelchair?

No, this is why when I applied for the job I didn’t tell them I was a wheelchair user, I found by staying in my wheelchair when things are not accessible it just makes my job 1000 times harder.

2) What was the reason for you applying for a job knowing you couldn’t use a wheelchair.

At first I didn’t think the job would be so hard and so much walking, I told work about my mobility issues and they knew I had cerebral palsy and used walking sticks. They didn’t see it being a problem. They only had a problem with me walking once they found out that I had been in a wheelchair before.

3) If you have decided not to use your wheelchair what do you expect to happen next?

I was hoping to get a flat that was more accessible to me but the local council told me they couldn’t help and to go away and rent privately. If I could have used my wheelchair at home it would have taken the strain of me. I wasn’t expecting the job to require so much walking

4) What stopped you applying for jobs that where more accessible to you?

I wanted too, but if I mentioned in an application form all my impairments I never got an interview. Sometimes I don’t know if I can do the job unless I try, employers where not giving me a chance to prove myself, I even had offered to work voluntary.

I don’t see my disability as a problem. I know from the outside it looks like I am causing myself harm and maybe I am. There isn’t much choice for disabled people out there. I would be happy to work as volunteer as different rules apply to volunteers. Until employers stop seeing disabled people at what we can’t do and see just what benefit I can bring to them, we stand very little chance of achieving anything. Just because my income is coming from a benefit system it doesn’t mean I am lazy and sit at home doing nothing. Not that I have ever been allowed to claim any benefit apart from DLA unless I have a full time job.

The way I see it I only have two choices.

1) Work within a job my employer doesn’t respect me or think I can do the job

2) Leave the UK

My ability to Work as a disabled person

Markinsutton — Mon, 27 Jun 2011 13:15:00 GMT

I must stop writing blogs and not posting them, the problem I have is a write these as I think in my head and when it comes to reading it back to myself they don’t make any sense. I then have to spend the next 3 hours re-correcting my spellings and grammar. Another problem I have is keeping on topic, so for this blog I going to be very specific. The topic will be my ability to work.

Growing up I never questioned whether or not I would get a full time job. It went without saying that I would. I maybe disabled by there is no reason why I shouldn’t work, it’s something I always believed in. at school I always wanted to be an electrician. I love electronics and had a good understanding of how it all worked. I did a two week work experience with a Firm in Godalming surrey and really loved it. The electricians all said I worked really hard. I know then this was the job I wanted to do. I remember working with one guy who drove a Toyota Supra 3.0i and I said to myself, wow! that’s the car I want when I get older. The money as an electrician is good and I really enjoyed it. Being disabled presented its difficulties my hand coordination was pants and I used to dribble a lot then also. Concerns for everyone else apart from me I know water and electrics don’t mix but from an early age I have had enough electric shocks they didn’t bother me. Having this disregard for my own health and safety has been a problem with my employment from the word go. I would never put anyone else in danger but my own safety is something which I have learnt over the years that I need just that little more extra caution around me and I be fine.

It did turn out that employers found my mobility and dribbling around electronics a problem and after completing my certification and doing another 3 month work experience placement for a company in Carshaltion it was felt by the college I was at and the companies that maybe I wouldn’t be safe doing these jobs. Not that I ever had an accident mind you, just they didn’t want to take the risks I was taking. Realising this I knew I had to find a job that I was able to do where no one would be watching me therefore I could take these risks without anyone knowing. Lucky for me my uncle knew of my abilities and offered me a job working for a massive national computer network company. I worked there for 8 years and really enjoyed it. Times where hard and I was constantly trying to prove myself to the other engineers that I could do stuff. There was never any question I had the knowledge but my ability and safety to do the job was under question a lot. Most times I was able to put these questions to one side. Sometimes they were just plain silly. I had a number of complaints from customers who said they thought I was stupid because of the way I looked and spoke but on a whole the company where very supportive. Things got a little worse when my uncle left, some bosses I had where better than others but I always had backing of the other engineers. Sadly for me the company went bust leaving me redundant.

Up to this point I never questioned my disability I knew there were things I found difficult but on a whole I just wanted to be treated like everyone else. I was finding getting another job hard. I did a course in social care and found a job working with deaf people with learning disabilities. I was finding this even harder than I was working with electronics and had to leave after 3 years. Coming to terms people where not giving me a job because I was disabled is something I found hard to deal with. After all everyone was finding it hard to get a job. The fact I was disabled was and should never be a reason for an employer not to give me a chance.

Facing these facts was brought home to me when I attended Portland College for the disabled. There were much more able and just as clever students there who couldn’t get work, so what chance did I have? One lesson I did learn at Portland College is being allow to disregard my own health and safety was not a clever thing to do, the college had no regard for my safety. With my eagerness to prove myself I had a number of accidents putting myself in hospital a few times and in a wheelchair for over a year. Realizing that I really was disabled now I had for the first time in my life had to claim benefits and applied to get disability living allowance, to my shock I was turned down. In the meantime I lost my flat because I couldn’t pay my mortgage.

It took me a long time to get my confidence back. I felt worthless and I had no job no home to go back to when I finished my college course. Just when I thought there was no way out the college offered me a job as a Learning support assistant. I was over the moon! I knew I could achieve more but it was a start. I found myself a new career in teaching. I went on to do my teacher training and got fantastic support from West Nottingham College to obtain my qualification. Bloody Awesome, I was thinking, I done it! Portland College helped me achieve my English and maths exams I was well on the road to becoming something worth living for. I replied for Disability Living allowance and tax credits and achieved them. There was just one drawback was my job was funded by the DWP to help disabled people get back into work. The government decided that residential colleges like Portland were not working therefore cut funding to the college and my job was made redundant. A BIG bollocks springs to mind! What was I going to do? I tried a number of jobs around the college without much luck. My deafness was proving too much of a problem and I didn’t have the right communication aids to help me communicate with the other students.

My confidence was plummeting rapidly my relationship with my girlfriend was at breaking point. I needed to find another job and fast. Thinking that this would give me the chance to move closer to my girlfriend in Worcester I apply to every school and council within Worcestershire. Every time I was facing the same barriers if I said I was a wheelchair user companies wouldn’t give me an interview and if I didn’t tell them there would be concerns for my health and safety. I was just ready to give up. My Girlfriend had left me because I couldn’t move to Worcester and I ended up having to move back to my parents in Sussex. Talk about hit rock bottom!

I found a company which I have had contact with before when I used to work with adults who are deaf and having learning difficulties. They had a job for a life skills advisor. I went for an interview they were pleased with my knowledge on deaf issues but felt that I was lacking experience and had concerns over my health so only offered me a job as a life skills assistant. Things were going ok at first. I found communication hard as no one was telling me anything and just expected me to know how things worked there. Things didn’t really become a problem until someone found out that I spent most my working time in a wheelchair within my old job. Questions were asked why I didn’t tell them in the interview and I was dismissed on the grounds of health and safety. A medical was done again and my hours reduced from 37 and half to 22 and half hours a week and was allowed to return back to work This affected me both mentally and financially. I felt the company have lost all confidence in my ability to do the job and now are questioning everything I do. I have gone back to square one again. I know I can do the job and when I am left alone I do the job well. I have been suspended again on the grounds that my mental state is getting worse and they are having concerns I am not taking my health and safety seriously. What is so bloody frustrating for me is that I am going to have accidents I can’t help it. We all take risks. I accept those risks as the benefits I can give back to my employer is worth it. Rather than just say no to me it would be nice if they just allowed me to get on and make my own adjustments. I am pretty sure I going to lose this job the same happen when I worked within social care before. Another thing which is frustrating is they keep telling me they are not like other companies and support people with disabilities into work. I only have one word to say to that Bollocks!

This is the second time I have tried to work within social care and failed. I know I have the knowledge as for the first few months working within this company they didn’t have a problem it was only when they found out I was a wheelchair user they had concerns. I have been suspend now for nearly two months now on sick leave which I think is wrong as I am not sick I am disabled . I only wanted two days off to get over a personal disappointment and its left me jobless. I am looking around for work with computers again but I am not holding out much hope. My worry is how much of my disability do I tell future employers? Too much and they say no. not enough and they find out later and I end up in the same mess I am in now. What is really wrong is I have no wish to put my health and safety at risk. The risks I take may look worse than others but I know my own limits and have learnt my lesson not too push myself beyond those limits. All I ask is I have a job that is flexible enough to allow me adjust those limits on a daily or even hourly basis.

One thing I have recognised is that by doing a voluntary job the adjustments are possible I probably work harder within my voluntary jobs and do more because I am allowed to make these adjustments whereas paid employment doesn’t allow this.

Last day in the Algarve.

Markinsutton — Wed, 15 Jun 2011 15:09:10 GMT

Well, that week has just flown pass. I find myself going back to
england in the morning. Am getting the last chance to sit out in the
sun by the pool drinking coke and ice. It's been a lovely 30c today
which I think is about 82f. I think if it was for the fact that my
medication runs out on Saturday I would have stayed longer. The plan
was only to stay a week. The risk of me having to return to work next
week and me being outin Portugal was just too high, I just couldn't
risk it.

It's been really nice out here and I wonder if I didn't have to spend
Â£250 a month on the caravan I could come out more. After all the
weather is much better here in the Algarve than it is in bognor regis.
Maybe if I don't save up enough for the caravan next year I will just
have to give up on it and spend long weekends here in Portugal.

The frustrating thing is I am so much healthier out here than england
I haven't had to use my walking sticks for 2 days and being able to
swim in the pool each day is just so nice. I guess this is what
holidays are all about and I know I needed to get away from the
hassles of not being allowed to return to work. What has been nice is
I haven't thought about it once since I been over here. I still not
sleeping well at night but on a whole I am feeling much better than I
felt this time last week.

In paradise

Markinsutton — Thu, 09 Jun 2011 16:52:30 GMT

Have never done a blog entry via an IPad before neither have I done
one sat next to a pool in what I would call paradise. I am currently
spending some time away from work and homes, spending it with my best
mate from Portland college Kevin in the Algarve in Portugal. This was
a very last minute decision for me as I didn't know if I needed to
return to work or not. After hearing nothing on monday night I thought
to myself sod it, I'm going. Not knowing when the best time to return
I've booked a one way ticket. I would be nice to know how long this is
going to last but I am just enjoying the sunshine while it lasts.

It would be very nice to live out here all the time. I know Kevin
would support me with the process but I don't think I got the bottle
to do something which is a mad as leaving the UK. I think if I was to
move anywhere it would be America or Oz. This would be just because
off my computer skills I think opportunities in both those countries
would be better. It seems specially here in the Algarve people in
generally don't have much money unless you live in the very posh
villas.

I think it's important to have a place to come and relax and chill out
Portugal does this for me. I would love to had that chill out factor
at the caravan but I am always trying to fix something there or pay a
bill, the place just costs me so much I could come out to portugal
once a month for the same cost it takes to run the caravan. Most the
time I spend just reading here, I would love to come here to write my
book it's so quiet and peaceful it would be prefect to sit here on a
lovely MacBook Pro. iPad has been nice to use out here but not sure I
would want to write a whole book on one.

Disabled and powerless

Markinsutton — Sun, 29 May 2011 06:22:00 GMT

Well, this probably wasn’t the cleverest thing I done. What is more worrying is my doctor has allowed me to do it. Is she trying to teach me a lesson? Maybe she understood my reasons behind what I wanted to achieved and thought to herself what’s the worst thing that can happen, Mark could end up in hospital. Being I have asked to keep the same doctor every time I go to the surgery she should know my case well enough by now to know just how much of a impact coming off such strong medication would do to anyone.

So what was I aiming to prove?

There is a few reasons why I asked my doctor if I could come off all my medication. I not sure just how much it was helping me. The last few months I have been feeling pretty shit and I wanted to know just how much of it was side effects from the medication and just by coming off it things would go back to the way they where. I have been put on so many tablets it takes me about an hour to pop them into my dispenser, until I get the medication right its pointless getting the chemist to do this as if I took the full dose of all my medications everyday I wouldn’t be able to move. This should have really given me an idea coming off them completely was a incredibly stupid idea. This is why I asked my doctor first was it safe to do so, she said yes. Well, apart from the ones for my blood pressure but to be honest I think they are the ones which are causing the nightmares hence given me broken sleep and making me even more drowsy so when taking pain killers that also make me drowsy it becomes next to impossible to drive.

In an ideal world I would just give up driving and say I don’t feel save. I know this would cost me my job and something I am not allowed to do. people say I am strong for doing the things I do. I maybe but that’s only because I am scared of what happens if I don’t. short of doing something stupid everyone believes that the job I am doing is the best job for me apart from my employer who seems to think that if they don’t help me then I will leave and they can pass that blame onto me. This is what the DWP will also say that I have made myself unemployable therefore to get lost and find another job.

Realizing just how much medications have been helping, I guess now it’s a stupid idea to come off them. My muscles have gone into such a spasm you may as well be stabbing me with a knife, talking of which I bet that wouldn’t even hurt me anymore. I have grown so used to being in so much pain I don’t think anymore would matter. That brings me onto doing something stupid. Whole question is just what. All I want is someone to help me. The last month people have just sat there doing nothing. Work have being a total bloody arse and given me no support to return to work. All I have seen from them is them standing there with their legal stick waiting at the door too beat the shit out of me. I don’t want another legal battle. I have had 3 of those already and I hate it. The only people who lose out is them. All the companies I have worked for that took me on have either lost staff because of it or have just gone under.

What makes all this just a load of shit is there is no reason for it. I have no reason fight. I have no children no partner or family to fight for. The only thing I have is the friends I have made but are powerless to do anything. It upsets me you are powerless to help as I know just how you must feel, I am powerless to help myself. I wish I knew what to do, coming of the medication wasn’t the answer I know that now. I don’t think I am on the right tablets but this is all that is on offer to me so I either take them or give up. My real concern at the moment is I don’t want to snap I am so close to breaking and have been for so long now something needs to happen. I just don’t want to do it again on myself just thinking of it has put me into a state of tears and I am so stuck in a corner with the shit being kicked out off me from ever direction I am hoping one of them will give up and stop. The problem at the moment I don’t thing each person has realized just how much they are hurting me and just how much they have kicked the shit out of me the last year. I also feel that most people are just sat watching either ignoring it or just powerless to help, or even worse is too chicken to help. To translate that into something you will understand if you are one of those who say “Mark, will pull through he is strong he always does” you are one of those who are too bloody chicken to help me, unless you are just one of those who don’t know me in person and are powerless to help. Either way it looks like I am doing this on myself again whatever I decide to do.

Next Chapter in keeping my job

Markinsutton — Thu, 26 May 2011 11:43:00 GMT

Right as I have a moment of clarity I going to write some of this down. I am able to think straight today as from yesterday I decided I just have to take matters into my own hands. So I went to the doctor yesterday and they have agreed that I can come off 95% of my medication which is works main cause for concern. I am very wary about saying too much on here as I got a feeling after receiving a copy of a report sent to my GP yesterday I now have the written evidence I needed to show this to my solicitor and turn this saga into a legal battle.

For too long I haven’t had much in writing from work the very cleverly worded emails and a few patchy supervision notes but on a whole on the face of it seems like they were trying to help me remain in employment with them. Reading between the lines the report sent to my GP yesterday it appeared like they wanted me to return to work. The underline issue they have is that they are insisting my disability is stopping me from doing my job. They have no vision or understanding of my disability what so ever. Under normal circumstances this wouldn’t be a problem. They told me from the start they didn’t want to know what my disability was and how it affected me. There was a small issue about the time I had off sick in my last job. They told me there was no need to explain but asked if this is normal for me to have this amount of time off. I said no and gave them the main reason I was off sick and asked if they wanted more information, they said no.

Throughout my time there I have been scared to take time off sick especially if this has been linked to my disability. The only time I have taken off is due to an ear infection. I thought this would be ok considering the company supports people who are deaf they would understand this is an unavoidable part of deafness. Even on returning they did not believe me that it cleared up and asked me to get a fit for work certificate from my Doctor for having 5 days off work, my doctor was happy to do this and I returned. I am not sure if it’s normal to have to now get a certificate for every time you have had time off work?

My employer has become increasing lacking in confident in my ability to do my job, I feel they have been so unjustified in it. I have seen other staff make much more mistakes than I have but because I can’t question what happens to them so could never prove that I been treated any different but one of them got a promotion. That was until I received a copy of a report send to my GP. I now believe I have enough to ask them why? They are saying that my disability is now their business and they have a right to know. I have only ever fallen over twice while at work and trip and broke my finger once. I have been 100% honest and reported these to work and filled out the correct reports. I have been asked twice to attend a medical by my employer, both medicals have come back with the same result that I am able to do the job and I have enough ability to assess my surroundings that I would not take unnecessary risks to my health or the health of the people I work with. On both reports my employer has said I have fed the assessment force information and not told them the whole truth, so they are ignoring advice in the reports.

I am yet to see how my disability becomes my employers business unless I have taken time off sick because of it. These are issues speaking to my solicitor today she feels the report could be seen very clearly as potential harassment and bullying. Work has no grounds to say that I am unfit to do my job and have been advised on more than one occasion to carry out an OT assessment which they have only accepted to do. Work has told me even if I get a fit to work certificate from my doctor they will refused to allow me to return. She said if they do this then go home and if possible get this in writing but if they refused and are willing to pay you then go home.

Independence

Markinsutton — Sat, 21 May 2011 08:43:00 GMT

I quite often get thoughts rattling around in my head but rarely get the chance to put these ideas onto paper. This is normally because I am too busy trying to deal with a spas attack or just unable to move.

I was determined to get this one down into a blog. I have been struggling the last few weeks to come to terms that I may not be as abled as I think I am. I have spent most my life being told that I can’t do stuff and this normally leads me to prove them wrong and go and do it anyway. So far in my life I have found this has worked for me, like they say live your dreams. I have noticed many of my fellow disabled counterparts are losing their independence because of cut backs made by the government. This is having a knock on effect on me. I used to get very little support before, I had the occasional physio sessions here and there, sometimes a bit of counselling from time to time but on a whole I was pretty much able to do what I wanted.

I have noticed now I am not getting this help the only help I am getting is being prescribed medication, the side effects of this is its making my CP worse. I am now getting to the point where I am unable to look after myself. The problem this is cause me is that now when I get told I can’t do stuff I really can’t. No one wants to help me achieve it and no one thinks I should. A big example of this is work. 10 years ago I was able to manage other people and track all over the south east of England attending service calls. Has my disability got worse? Has it heck! If anything I think it’s got better my speech is much better than it was 5 years ago, my throat infections and ulcers are much better than they used to be, I used have a ulcerated throat nearly all the time before. I now have digital hearing aids allowing me to understand more of what people are saying. I am spending more time out of my wheelchair.

So what is going wrong? I am seeing from what other people are doing the more they help myself the less help I getting from others. So should I just sit here and do nothing in order to get my independence back? What does it take to make people listen to you? I would love to say to myself bollocks to them all and just go and do things myself but I know in the long term that’s likely to cost me my life. I know in the pass when I have really pushed myself to do something I ended up crashing the car or something as I just not been able to react quickly enough to something. My car is the only real independence I have left. I know I could easy say to doctor or medical professional I am worried about the effect my medication is having on my driving and they would take my car away from me without a moment’s hesitation, do I really want to do this? Will it make people realize that I have now lost all my independence? Am I just being over dramatic about it? After all what I really want is some help with the things I had before and maybe some help at home. Maybe if Social services refused to pay for care support for me I should pay for this myself out the little DLA money I have left.

Interview with BBC Surrey Radio with @scope

Markinsutton — Thu, 19 May 2011 09:15:00 GMT

http://www.guardian.co.uk/society/2011/may/15/disability-living-allowance-scope-cuts

Further to my story published in the Observer newspaper last Sunday 15^th May. I received a phone call from the BBC Surrey Radio program who said they would like to interview me. I spoke to a presenter on Monday who spoke to me in length about how I get treated by the public with an attitude that all disabled people are just living off benefits.

I have been trying very hard to hold down a full time job with very little support from the government to carry on working. I have had to take a massive cut in wages since going part time as my employer is unable to employ me full time. I refuse to give up and carry on working part time and doing voluntary work when I can. I have so little money after paying for my own care and bills around the home. I know I would be better off on benefits but I think it is good to show employers that disabled people can work if they are given the correct support.

My disability is often getting questioned both by my employer and the general public. I feel quite upset over having to justify why I need some adjustments made both within my work place and when I am out shopping. I try really hard to hide my disability as I don’t like it when people give me that look, to all disabled people reading this will know the look I mean. It is even worse when people shout out abuse at me. I have had to come home in the pass feeling unable to go out sometimes because abused has been thrown at me.

You would think it would be just teenagers who would do this. Well, you would be wrong a middle aged lady felt the need to question why I was parked in a disabled parking place at the local supermarket the other day demanding to know what my disability was.

Here is a recording of the radio interview I had with BBC Surrey.

Full program on BBC Iplayer for the next 6 days scroll to 1:37 to listen to me

Surrey Breakfast with Nick Wallis

What does one do.

Markinsutton — Mon, 16 May 2011 20:40:00 GMT

What does one do? have you ever had one of those moments when you just don’t know what to do? things are changing so much for me lately I am having problems keeping up with it all. I hope by writing some of it down it may help, however I did the other day and after writing 10,000 words I was totally lost and just didn’t know what to do. So I am writing this a little different as I would a blog in the hope you can help me.

The thing is this, my disability is changing so much the last year or so I not even quite sure just what I can do anymore. As a child pain and barriers never ruled my day and even with limits I could do pretty much anything. I am finding more and more now that I am struggling to last a whole day without having to lay down as I am in too much pain. Normally its back pain as I can’t walk straight my back gets twisted and it makes it very hard to do stuff. I never had these problems until I broke my leg in 2005 I was quite happy standing on my right leg with it taking all my weight but now I am finding that I can only stand for about 30 minutes before I have to sit down as its just too much. This is the same for walking. I also having problems sitting down too. While writing this I am sat in a open back chair with no support on my back, as shown in picture and I am in so much pain I am having to rock back and forth to stop my back from going into spasm. I used to use a wheelchair most the time when I was at work before and this helped as when I got home I could do stuff I wanted without having to rely on my wheelchair. Since changing jobs I am unable to use my wheelchair at work, plus my new flat is not wheelchair accessible so now I can not use my wheelchair at all on a general day to day basis. This has meant that when I get home I have to lay in bed most the time and get up when I can to cook food, go to the toilet and do house work.

oh ouch! I have to move. Going to sit on sofa too much pain. Lets see how long I last here. The problem I having is dealing with every part of my syndrome is just too much. There are areas that I can ignore and concentrate on others. Having to deal with it all is just too much, it just wears me out. So I am guessing I am having to list just what I can and can’t do and work out which areas I can ignore and which I have to deal with. Walking seems to be a big area that causes me pain so by getting out my wheelchair causing myself discomfort by doing this and should I say “no, I not going to do it?” the problem I have with this choice is its limits me in so many ways and as well as not keeping my strength up in my legs it means that it limits me within the work I do. The other areas I have problems with is hearing and speech. I have to concentrate so much on other peoples speech and just what they are telling me it makes it hard to understand just what they are saying. This is made worse by finding the right words to say back to people. I will often not know how to construct a sentence and have often said things that people have looked at me back and said “what?” I quite often get ignored as being stupid because I haven’t been able to get my point across. I get really hurt when this happens as I know what I say is a clever idea but only need someone else to see it is also. I will think that sometimes I am stupid and what I think is a good idea is stupid, I just not seen that.

With both my mobility and hearing being my two most visible impairments. There is more severe hidden impairments that people don’t see, ones I battle with everyday. The most frustrating for me is the difficulty eating. It really is one of my pet hates and I really do hate every minute of seeing food, eating it and then having to recover from eating it. It really does knock me out and I really do struggle having to keep focused afterwards. More or not I have to lay down and give myself time to rest. Talking of which I need to do now.

Back again! Where was I? oh yes food. Anything to do with my mouth and swallowing just really pisses me off. I like to talk as I think its good to get my point across but the effort it takes to understand people is so hard and with not knowing just how they are receiving me makes it so much harder. I normally come away after talking to anyone thinking, Oh God what just happened? I became so confused with this at one point I stopped talking all together as it made life so much easier just having one way conversations. It also meant because I wasn’t talking the ability to eat better was there as I wasn’t placing so much strain on my muscles to talk and swallow. One thing I have notice is that when I talk I dribble a lot and this causes an additional effect of chest infections and feeling heavy to breath.

I have been looking at jobs that I can do with my limitations its been really hard. I think I need to work alone doing some sort of repair job. this could be building computers or process line work. The problem I think is most manufacturing is done by computers these days. I have been looking for companies who need someone to do testing or something. maybe design or research could be good but I tend to find that design or research is done as part of a team. I like working with teams but I also think that sometimes I struggle to understand others.

I guess the first question I had to ask myself is do I try and keep my current job? I think my employer doesn’t want me there as they feel I am putting my health at risk and as an employer they do not what me to do that even if I am happy to do that myself. I have always had an understanding that every day for me is a struggle and its that struggle against my disability makes me a stronger person and gives me respect. By stopping that struggle people would just give up on me and I end up getting worse. If I thought I could give up on work to earn a living and carry on doing voluntary work I would jump at the chance to do that. I love doing the voluntary work I do as I can take a rest when I want and still get the same amount of work done if I was working full time. The way things are with the government at the moment I can not see the job centre allowing me to give up work and claim benefits. I have never claimed benefits apart from DLA in my life. Now I am 38 and feel that I am beyond the point of being able to work for someone else without them getting worried about my health.

The only choice I have left is to work for myself. I have been thinking of trying to learn how to write programs for android devices. I think I maybe able to use my skills working with people with disabilities to make them more accessible to everyone. I think there is so many for Iphones or Ipads but these cost a lot. I would be able to make something for android. I haven’t looked into how easy it to learn the language to program but its an idea. What do you think?

Getting and Keeping a Job!

Markinsutton — Fri, 13 May 2011 08:45:00 GMT

Being signed off work this week hasn’t really helped my state of mind. With the Hardest Hit protest on Wednesday facing the prospect that I could be job less scares sweet living Jesus out of me. I have been quite lucky I have had enough energy in my time as an employee to fight for my right to work by standing my ground when employers have used my disability against me. I try my best to hide the effects of my disability from people and manage the after effects when I get home in the evenings and weekends. This has only ever become too much for me once before back in 2003 when I had a mental break down and decided to give up and never to try that hard again. This affected me in many ways. The two which people noticed the most was because of my difficulties with swallowing and eating I decided I must rest my throat muscles to use them only when I needed too primary for eating and drinking. I was very underweight and need to eat better foods. So I stopped talking and became a selective mute in 2004. This gave me a chance to rest my voice and by not speaking up for myself I was able to blend into the background and be ignored. I totally lost my confidence and I was ready to give up on life. I knew that I could no longer achieve what I hoped for as a child and everything that was told to me as a child to push myself was total bollocks.

It took me a long time to recover from the trauma and I was able to cover most of it up. Most people didn’t know I was a selective mute and those who did didn’t care to help me. I ran away to Nottingham and spent 5 years there in isolation from my friends and family. I thought I could manage with my online friends from AOL but this was quickly disappearing and I was feeling quite low. This was until I met my girlfriend who changed my life for ever as for the first time in my life I thought that I would stand a chance of leading a normal life and get a job near her house in Worcester and we could move in together. I spent 2 years from 2007 to 2009 trying to find work but no employer wanted to give me a chance. I knew this was because I have now ended up in a wheelchair and this is all they could see.

I had to fight again. I knew by not pushing myself I would never get what I wanted which was the job that I was able to do and live with the girl of my dreams. I was totally gutted when this didn’t happen and after trying everything my relationship broke down with my girlfriend and my dream of moving from Nottingham to Worcester was shattered. I had reached an all-time high and it was taken away from me again. One for not giving up I knew my ability to whole down a full time job was possible and by now I have managed to stay out my wheelchair for most the day and only really using it to go shopping in Town and food shopping at Tesco’s, those stores are so dam large.

I looked for another job anywhere in the country and found one back down in Surrey not far from my old home in Sutton Surrey. I applied for the job and got an interview, before I could even get back home to Nottingham they rang me up to tell me that I got the job. Woohoo! Great I thought I working for a great charity who support people with Learning difficulties. I was sure I wouldn’t get any problems after-all they are a charity who understand disabilities. What could go wrong?

It didn’t take long for things to quickly go downhill. Questions where being asked about my ability to do the job and health and safety was brought up that I shouldn’t be walking if I was a registered wheelchair user. I couldn’t see what the harm was. I have accepted that I wanted to walk and all I asked for is maybe in the winter when it cold I would need time to rest as the metal plates in my leg cause me problems in the cold. My employer wasn’t happy with this and after already having one medical before I started there they asked if I would have another one. I agreed and went along to the medical. The doctor who did the assessment felt considering my impairments I managed my disability very well and signed me fit to do the job. This wasn’t good enough for my employer they said that I mislead the doctor by not going in with my walking sticks, wheelchair or hearing aids. I told them the doctor assessed me without my aids and still passed me fit to work, so with the use of my walking stick and hearing aids etc I should be more than able to do the job. They disagreed, my hours where cut from 37.5 to 22.5 hours a week. Even with Tax credits this was a drop of income for me of just under 7 grand a year.

I have been struggling ever since to convince my employer that I am able to do the job. I feel they have been setting traps for me to trip up. Most of them I spot but some I don’t and with no one behind me to support me going into supervisions at work is very stressful time for me. To sit listening to just what I done wrong even though the things I do are not wrong just different. I called scope in to help and they have tried their best to help me but even from first contact with Scope my employer became very defensive towards them. I have had an uphill battle for the last 9 months to keep my job and even if I have to go off sick for 1 day my employer questions whether or not I should come back to work and send me off for another medical.

I had a massive personal disappointment 2 weeks ago while on holiday and it really knocked my confidence. I was due to return back to work but as I was only working 2 days the next week I decided that I would take the two days off to get over the disappointment and anxiety I was feeling so I would be fit and ready to return to work. On returning to work after having the two days off my employer refused to allow me to return to work unless I had a medical certificate from my GP to say I was fit for work, I was gob smacked. I only took 2 days off and now they are questioning my ability to come back to work. Anyone else they wouldn’t have said a word. I went back to my GP quite upset that I had to justify why I taken only 2 days off. My Doctor felt because of my employers concerns and to help install some confidence into them maybe it would be best if I took a week off to make sure I have fully recovered. I said I was ready and with the new pain killers I was on helping my muscle pains and spasms I feel it would be best to get stuck in. she disagreed and signed me off work for a week.

That week is now coming to an end and I am due to go back to the doctor as even with my sickness note running out on Monday my employer wants a fit for work note before I could return. Well, this is what I thought they wanted as it is what they asked me to do last week. I received a letter this morning from them saying even if I do get a fit to work note from my GP they are refusing for me to return back to work until I have another medical and OT assessment. This will be my third assessment by my employer. I am getting rather fed up that I have to keep jumping through hoops to prove to them I am fit for work.

All these tests and assessments are really getting me down and I have been feeling quite depressed and suicidal about it. I want to give up and not try anymore but I know if I don’t try to pass these assessments again I just end up on the jobless list and then having to go through the whole process in reverse with having to prove to Atos that I am unfit to work so I can claim benefits. From what I have seen its going to be very unlikely they will make me unfit for work considering my doctor thinks that I should work. Just why will my employer not just accept that I can only do so much and be happy with that? It seems to be all or nothing with them.

Hardest Hit March 11th May

Markinsutton — Wed, 11 May 2011 18:18:00 GMT

I attended the “hardest hit” March in London today. I was very nervous whether or not I would make it into London. My pass experiences have taught me getting into London is not an easy challenge for me. However I felt it was important that the government took notice of us disabled people. The cuts that have already been put in place have affected me at work as Access to Work no longer pay for equipment. I have had to pay for this myself. Cuts to my medical support means I am no longer able to see a physio, I used to get physio once a week to help with my muscle spasms caused by my cerebral palsy. The government are saying we are not going to get effected by the new welfare reform but we are already been hit by cuts made by local councils and central government.

I work in social care and I support many adults with learning difficulties who will lose their Mobility component because they live in Residential care this money goes towards paying for my services to take them out into the community to access day centres, shops and social events. I have been struggling because these cuts have been made the people I support are no longer able to use my services and with my employer being a charity they are unable to fund my job full time. This has meant I have had to take a cut in hours and work part time, leaving me 100s of pounds short in wages every month.

If the government decide to take my DLA off me this would leave me without a mobility car that I use to get to work. With the cut in my wages Tax credits doesn’t replace this loss income and I am having to make cuts myself. I am totally shattered by the end of the day, by the time I get home I am far too tired to cook. I used to be able to eat out or buy takeaways but with very little income I am unable to do that now.

I have been very pleased with myself today that I have managed to get up to London to show my support to say how these cuts are going to affect me and many disabled people like me. I didn’t manage to do the whole route of the March as it was just too far for me to walk. I joined the march at Big Ben and walked pass the House of Commons down to Victoria tower gardens where I was able to sit down and catch my breath. Today has shown me just how hard I would find coping without my Mobility car if I had to rely on public transport.

I am very lucky I have had a week off work to recover from today but it will be back to work as normal for me next week struggling with very little support from the government and the fears there is more cuts to come.

Volunteering @MERUCharity

Markinsutton — Tue, 10 May 2011 23:06:00 GMT

There are many reasons why people volunteer. I want to give you all a personal account why I love Volunteering at MERU. Being disabled holding down a full time paid job I find really hard. There is so much pressure for me to perform and complete tasks, I find this really difficult. I now only work 3 days a week in a paid job so in my free time I can volunteer for MERU. My background is engineering and computers but because of my disability I found it next to impossible to find work within this sector.

MERU gives me a fantastic opportunity to use these skills and give back a little to the community that I am unable to earn in wages. There is a lot of talk these days about benefits being cut and I am very worried myself if my benefits like Disability living allowance get stopped. I have tried really hard to work full time but my health has suffered because of this. My benefits allow me to do voluntary work like working at MERU. My disability living allowance provides me with a car so I am able to drive to the MERU workshop a few miles away from my house. Without these benefits I would have to attempt to work a full 37.5 hour week. Something both my Doctor and Employer say is putting my health at risk and was making my Cerebral Palsy very hard to manage.

By Volunteering I am able to do really cool stuff like join the Design team and factory workshops. It gives me a chance to work with great bunch of people and really feel part of a fantastic team. If I am having an off day and not feeling well this is not a problem as I am volunteer I just let MERU know and they are totally fine with me not being able to attend. Volunteering has given me a real sense of achievement without the pressure of having to worry about targets, taking time of sick and worrying about who is going to do my work when I am not feeling well.

MERU is a great charity that makes equipment for children with disabilities. They helped me when I was a child. They provide equipment that otherwise would not be available on the market. Coming up with ideas too enhancing the lives of children and making such a difference to their life’s as it did to my own. If you would like more information about MERU take a look at their website www.meru.org.uk

My view of my employment being disabled

Markinsutton — Sun, 08 May 2011 16:11:00 GMT

Has really be struggling to write this blog this is mainly because I have new followers on Twitter and friends on my facebook and I don’t want you getting the wrong idea about me. Another real key factor has is I haven’t been feeling myself lately, so much so I have been off work now for nearly a month. Most of this is because my doctor doesn’t have a clue just how to help me. they have had to refer me to mental health services just to get to the bottom of things as I now have point blank given up trying to explain to so many different doctors just what the problems are. None of them talk to each other and have no idea just why I am on so many different medications and what effects they have on me on a daily basis. My employer isn’t much help either and is in total panic on where they stand. Despite saying they are not like other companies as they work in social care so understand my needs. They are acting very much the same or worse than other people I have worked for in the pass. They don’t want me to do anything that could in any way affect my health so without lying to them, something I really crap at doing, it’s hard to hide my disability from them.

The question I had to ask myself is why am I hiding my problems of my disability in the first place? This is quite simple really and something which the Independent on Sunday are going to publish in the newspaper next Sunday. I was hoping the article would have appeared in this Sunday but looks like maybe next week. That is people just don’t want disabled people in their work force. To be quite frank I don’t blame them. Why would you employ someone who needs adjustments in order for them to carry out their job when there are queues of people without any impairment willing to do the same job? From a personal note I know what job I can do without little adjustment and it’s been proven that I can do it well. That is teaching ICT. I was a Cisco certified instructor and the students I taught said that they found my method of teaching very hands on and liked working with me. Noticed I used the word ‘With’ this is something I have always done ever since I started work leaving school, it’s something that managers find difficult to deal with. I don’t believe anyone should have the attitude they are better than anyone else. I have had to manage people before and I always give people respect and allow them to make their own choices. It’s something within my current role as a social care worker I thought would be really useful. Giving the service users the choice to do what they want is something the company I work for say is their primary target. In practice it is quite different. I have not yet been allowed to make any mistakes without getting a right ear bashing off my manager and get constantly reminded of those mistakes every week.

Realising that my work isn’t helping my mental state of mind I decided that I must do something else, something for myself. I tackled this in two ways. One was to volunteer for MERU a wonderful charity that makes bespoke equipment for children with disabilities. I love Volunteering for MERU and it’s a charity that has helped me when I was a child, so volunteering for them now really gives me a sense of achievement and I am learning new skills every time I go there. The only problem I have with volunteering at MERU is my energy levels. I never have set hours I work every week so fitting these around the times I can volunteer at MERU is hard but they are really great and allow me to come in when I can. I only wish more companies where like MERU. The other thing I had planned was to do a flying scholarship. I love flying, well ok! I only done it once but have always liked the idea of how free you feel in a plane. I get the same sort of sense in a car but in a car you are limited to road and traffic living in London isn’t a great place to go out for a drive. Sadly for me I didn’t get the scholarship so that great idea didn’t work out. It broke my heart not getting it as I put so much effort into getting to RAF Cranwell for the final selection process I am pretty sure I couldn’t do that again. Maybe this was the reason why I didn’t get the scholarship. I am pretty much on the edge of breaking point dealing with my disability maybe they thought it would be too much for me.

This brings me onto another point. Being able to do something and wanting to do it. I have always been the sort of person if I have wanted to do something I will, being disabled or not. It is an interesting word ‘Disabled’ one I have refused most of my life to consider myself to be disabled. I have grown up with my impairments and I totally understand just how they limit me doing stuff every day. It may take me a little longer to do stuff but I get there in the end. This attitude is changing today. I am no longer allow to take longer to do stuff if I can’t do it first time and correctly people don’t want me doing it at all. So this really comes back to the question if I am pushing myself too much then why am I not achieving the goals and targets set to me by work? Am I doing a job that I shouldn’t be? If this is the case then why will no one admit it? My employers told me they had no problem employing me as a disabled person so why is it a problem now?

My primary focus at work has always been to earn enough money to live on. I enjoy good things and I like my toys and gadgets. I worked hard when leaving school to obtain qualifications so I could do this. My School never believed in me either this is why I was never allowed to take my GCSE’s little ironic considering 2 years later I left college with 4 ‘A’ levels. We would love a job that we enjoy but its rare these days that happens as a disabled person I really don’t expect it but as long as I am earning enough to live on I don’t care. The reason I don’t care is because if I am earning enough money I can do the stuff I want when I get home, providing work doesn’t take too much out of me. Where does one go now? I think my days are numbered within my current job. I have tried to work in social care before in a residential home and it didn’t work out. The company I work for no say they are different but it’s clear they are just like everyone else. What worries me getting anyone to admit it, they would hate me talking about them openly on the internet but personally I don’t care. I approached scope to help me within my work but they seem to be really snowed under with cases. They have sort of made my employer realize they cannot be treating me this way but as yet nothing has been put down on paper. The fact I been off for a month and still waiting a reply from them is not good.

The future! I have approached another charity about employment and I hoping they are not going to take the same view as scope did that I can do my current job and it’s all about adjustment. My employer has made it very clear they can’t make these adjustments it’s not reasonable for them to do it. They feel by cutting my hours is the best adjustment they can make and that if I am unable to do these hours then I should consider leaving. Scope where not prepared to consider the fact that I can’t do job despite following me around for 2 days and recommending adjustments my employer refused and they just left it. I have been desperately looking around for other work. I have also been asking myself should I be working at all? I would love to be in a position where I could live with someone and not have to work. The only person who is willing to allow me to stay with them is my parents and I don’t really fancy moving back home, not that it’s ever been my home.