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Tuesday, 21 February 2012

Understanding how lucky I am

Over the past year I have learnt much about myself and other people and so I need to take a moment to reflect on my experiences and in essence how lucky I am to have the life that I do. So many people have to deal with so many more injustices than myself, which I can only begin to imagine the effect that this has. I have made the effort to learn about other sick and disabled peoples lives, to allow me to appreciate what others go through on a daily basis. This learning has made me realise that things are not always clean cut as they seem, leading to me having a greater empathy for people in different situations. I have done my learning through talking to people on social networking sites like Twitter, as well as through listening and taking note of the news and the media as a whole.

There have been a number of different items in the media about disabled people which I feel is another reason I have learnt to question what I am told and find out the truth, as unfortunately much of what the media portrays is not the truth, as you can imagine this adds to the feeling of inequality. As I learn more I gain confirmation of how lucky I am, yes I am disabled and have many problems to deal with but this is nothing compared to the troubles that many sick and disabled people have to face.

Then you have the problem of the way that the media reports those who claim benefits, only ever focusing on those that abuse the system, as I write this I have 'Fake Britain' on in the background with exactly this subject being discussed. Sadly there is abuse of the system, but not to the extent that the government is trying to claim. The majority of claimants are genuine and if they didn't have this money they wouldn't be able to live, life is hard enough as it is so why should it be made harder for those who live through adversity. Rarely are the true problems of living with a disability reported, which leads to many disabled people, including myself feeling like we don't have a voice and wish that I had more of a voice, but at least I feel I am heard more than some.

There has been one good thing come out of media coverage and that is showing the truth about what really goes on in care homes. Panorama reported on the abuse which was occurring at a hospital for adults with learning disabilities. It was shocking to see some of the things carers got away with and unbelievable to think it was allowed to go on for as long as it has done. Panorama has put such abuse into the forefront of peoples minds and has made people sit up and listen to what really is happening and for this I am hopeful that some of the abuse that occurs will stop and be challenged. The sad thing about what has been occurring at this facility is that I am sure it is not the only place that allows such awful things to happen. Again this made me realise how lucky I am because I have not had to go through such an ordeal and will never have to due to the nature of my disability and the support network that I have, whereas it is the harsh reality for to many people living with disability and illness.

I have had negative experiences throughout my life but from them I have grown as a person and only recently have realised that I can use some of my negative experiences to help others and campaign for change. Recently I was in my local pub and there was a man who I hadn't seen before and he started to get involved in conversations that were being had by the people I was with. I have recently been getting on a bar stool with help from friends, so that I am truly involved in all that goes on at the bar, rather than be someone on the outside looking in. After a while I decided that I needed to go to the toilet so got back in my wheelchair and headed to the toilet. It wasn't till I got back that he started to treat me noticeably different, using phrases like 'trapped in my wheelchair' and generally looking at me with a pitying look. This experience set me back a little bit because I hadn't had people say things like that to me for a while and so wasn't really prepared. The next day I went in the pub again and spoke to the landlord and lady about my experience the night before explaining how it made me feel and their reaction was great, I felt valued and realised how lucky I was to have friends like these. The man who upset me came in while I was there and he was told quite nicely he was not welcome and told to leave which just confirmed that feeling that I was valued.

When I speak about people who are sick AND disabled I am referring to those people who often have hidden disabilities like M.E. My disability is a physical one and so people can see the difficulties that I may have, but those who have hidden disabilities are grossly misunderstood and treated extremely unfairly. This can be seen when looking at Employment Support Allowance (ESA). ESA is split into two main categories, that of which is for people who are unable to work and that which is for people who it is anticipated that they would be able to work at some point. This sounds fair until the stories of people who really aren't 'fit for work' are found to be. It has been made one of the hardest benefit to get, and the assessment process is ridiculously flawed, the form is complicated and if the claim gets as far as having to attend an assessment it is completed by someone who has no medical knowledge in an appointment that lasts only 20 minutes and they take everything literally even when the person being assessed may have insight problems and is not fully aware of all that they cant do. As I said at the beginning this makes me realise how lucky I am. I may be in a low paid job and feel trapped at times, but at least I am able to work and have a job unlike many people who are seen as 'fit to work' as well as an employer through all their faults are flexible and encouraging.

I was talking last night to some friends about the problems I and others face and what it is to be different. We were discussing what it was meant to be 'normal', I explained that what I mean by this is to be an equal part of something and not to be treated differently. In many situations I am lucky that I feel normal but there are times and will always be that I do not feel normal quite simply because of the way that I am treated. We were also discussing the abuse of the system and how it is those who really need the support that don't receive it. Over the past few weeks I have grown closer to the people I was with last night and I feel I am beginning to make them understand some of these problems that I face. They are all in support of me and agreed there are some people who abuse the system, which they do not feel is right because they see there are people who are more deserving than someone who doesn't make any effort to find work, the group of people I was talking to know someone like this and they are losing any respect that they had for this person.

The above are just some of the things that I have experienced over the past while that have firstly made me realise how lucky I am but secondly that I need to continue to fight for those who are worse of than me because it is often not that easy for them to show they have a voice. I will continue to open my eyes to other people and the difficulties they face with the hope that I can help support them to challenge and campaign for change. On my own I have a small voice, together we can work towards change.


  1. I've been toying with the idea, recently, of trying to form an organisation to research real disability issues (which could cover benefits, employment, discrimination, and so forth) and educate the general public (which includes everyone) about these issues, and promote such education. This could, I'm finding from some digging, be charitable, or it could be done more as a campaigning organisation. It could be done as both, with the charity bit subsidiary to the main body, and the charity could get charitable status. Then it would be more complicated, but could draw on a wider range of funders. Or it could be one group drawing on both lots of funders, but without the bother of any of it having charitable status.

    The idea's burning my brain a bit now, actually. It would be hard to do quickly, but an organisation could develop enough kudos to be a voice that people listen to. The other thing is, if it were done for and by the sick/disabled, it could be a source of employment, or at least contracting. Doing research, writing reports, keeping an eye on the media, writing complaints... all things that can be done at home on a fairly open schedule. If you run as a charity, you can get donations as funding. If not, then you can get research commissioned. If a bit of both, then both. A charity can have a trading subsidiary, for example. Lots of options. Far too much for me to go out on a limb on my own for, though, if I'm being in any way careful of my mental health.

  2. I didn't see the Panorama programme, but I have read many comments about it, and nothing I have heard surprises me.

    Even in so public a place as a hospital ward, the vulnerable are treated amazingly badly.

    When I was in Ward 32, Arrowe Park Hospital, Wirral, toward the end of January, one old man was bullied and harassed by the staff unmercifully. Yes, he was slow, so talking to him needed a little work. Not a lot - just a pause, to allow him to collect his thoughts.

    Instead, they harangued him, 2 or 3 of them at a time, not even giving him time to think.

    They had him permanently plugged into a saline drip at one end, and a urinary catheter at the other, as the nursing staff had convinced the consultant that he wasn't drinking. He was - we, the other patients, kept him supplied, because the nursing staff did not. They were, though, aware of this, because we told them.

    They would take him to the toilet, bring him back and put him to bed with his clothes caked with excrement.

    Eventually I had enough,and upbraided the staff for their treatment of him, after which they left him alone for a while.

    And this was just in the 4 days I was there - god knows how long it had been going on, or went on afterwards.

    Later, I discovered that potentially life-threatening information was omitted or removed from my records, with the result that I may well be dying - the jury is still out but, if I'm right, I'll be lucky if I see the end of this year (see ).

    The cynic in me wonders, in the small hours, when I'm lying awake, how much the missing information is payback for my "interference"?

    Paranoid? I wonder. . .

  3. I am 23 years old. I have a diagnosis of M.E. and a further yet to be diagnosed condition affecting my peripheral nerves. I have been suffering with M.E. since i was 13 years old and the additional problems for the past 12 months. The point is no one sees my condition bar the few professionals that actually know what it is and and I struggle every signgle day to function in a world that isnt cut out for any disability.

    Due to the M.E. sadly at 23 I cannot keep myself fit, i cannot go through an entire day without paying the price for any amount of activity and now due to the additional problems my disability is becoming severe. No one else can feel the numbness that creeps down both of my arms, or the knee buckling weakness in my legs but i have to try and continue because I have no other choice. Like thousands of other people who have a disability that isnt outwardly obvious I feel under immense pressure to be ok when i am not.

    Apart from seeing my specialist directly about my condition their is absolutely no support for the secondary problems it causes. There is no support to keep the rest of my physical health up to scratch and it is impossible to motivate yourself with no support.

    I am not getting any better even though my disability is still as invisible as it was when i was first diagnosed.

    Every day is a struggle and its a struggle that no one else can see but it doesnt mean it isnt there every minute of every day.


  5. I understand the problems associated with SSDI and their strict requirements. I'm a t-4 para and worked for 20 yrs. At this time my disability prevents me from doing the job that i use to do. Social doesn't seem to see it the same way i do. I have been reading this great book trying to get all the info i can to win my case. Check it out it may help you too.

  6. What you said is actually true that disabled people don’t get proper treatment as they should and that they are sometimes looked at as a burden. It is unfair for them to be treated that way because they are still human beings and they didn’t choose to be disabled. What we can do is help and guide them along the because as most people know, we have professionals and support groups offering help to aid them.

    Erminia Cavins

  7. I'm 27 live in usa. I'm disabled I can walk for now you can tell its not easy for me to do so at least should be. My fingers being as crooked. So kinda a give away if pay attention

    I get 1 of 3 responses from adults when I go to store. which is at this point is only grocery store for sanity.

    1. The hovering male you know 45-55 yr old guy who insits n helping you even when don't want it( I am generalizing as usually men in this age range who do this 3 womeh have who think in there 30'a) and infring on your personal space. You don't know what I'm looking for do your own shopping I don't need you to ask 100 times I swear this guy did if I'm ok and if either of these 2 guys had gotten closer idk what id
    have done but action with these 2 cases would have been taken. At least other men though wanting to be helpful kept personal space in mind.

    2. The oh sorry woman. Usually around 30 but I've gotten it from some younger women to. Oh I feel so sorry for you. Can't we do something oh how unfair.

    3. But you look normal kind from what seems to be what I call collged age kids 18-25 yr olds when they say I look normal(these kids are why I no longer go to my fav craft store) I show them my fingers that usually shuts them up but I hate dealing with it. The 1's who are smarter(all humans including self are stupid but some less then others) become like 5 yr old and chase after me to find out about me. Less smart ones are left to figure out how they failed to notice a lot of things.

    I was shocked when this 30ish yr old women had just stoped to talk to me like I was normal her tween daughter had gotten ahead of her as tweens do I think the girl was 12 she didn't want boys to see her so I asked her question as she was going by and she stopped we chatted for few laughing like old friends best feeling ever.

    I love kids because they have no fear esp kids between 3-6 yr olds preschool kindergarten age are the best. They see everything are sweet and honest and if they don't get it they ask. Its so precious. I really think the 3-6 yr olds get the world the best if somethings not fair they say so. Though fav incident was last yr the almost 3 yr old I think at Walmart no fear her mother wasn't far behind her came up and tugged on my dress do you have any monies so I can get a toy. I looked at her mother who shrugged you could tell was trying not to laugh they were their for something else and only so much control you can have over almost 3 yr old and what comes out of their mouth is alway funny I handed kid 2 singles it was to cute not to. I much prefer the honest then oh I didn't nitice,I feel sorry for you or let me over help you.

  8. I am disabled. Hand my friend 100% blind. There was not a parking spot of a safe place to be. Please share the video. We have to stand up once and for all!