Posted by: mads04 | March 31, 2016

Get up, Stand up. 

If you live in the UK you may be aware that the government tried to cut financial benefits off disabled people. A shithouse trick in my book and they would’ve gotten away with it if it weren’t for those pesky kids!! When I say pesky kids, I mean the British public. The backlash was so severe that the government had to reverse its decision not to financially punish disabled people simply because we are erm… Disabled. 

When diagnosed with MND, I received no disability benefits for six months simply because I never had the right support whilst filling out the benefits form. Bear in mind the doctors had basically told me I’ll probably die within 12 months! I only went on the higher rate of disability allowance  18 months ago, so for 3 years I was on nothing, then lower and middle rate money. The whole system is flawed. How the hell can you go on all 3 rates of disability payments with a terminal illness that gives you a 2-5 year life expectancy?  I even had to attend an interview to see if I could go back to work a year after diagnosis! You couldn’t make this shit up. 

The MND charter was delivered to 10 Downing Street last year, the charter is a petition designed to help people living with MND get quicker access to benefits (see above) and medical needs etc. A reception was held by the MND association to celebrate this and 77 of the country’s MPs attended,  all posing for pictures with people with MND and claiming they’ll do everything they can to help us. Good stuff I thought, even though I was sceptical at the time about most of the MPs who attended that day. Some MPs will use an opportunity like this to get votes, that’s the reality of politics. 34 MPs of the 77 who attended that day, voted to cut £30 a week from disability benefits. I’ve explained my worries about these MPs in earlier blogs and to the chief executive of the MNDA at the time of the reception. The MND association can try and explain it as nicely as they can, but the bottom line is these people who enjoyed their free champagne at the charter reception, stabbed those very same people who they posed for photographs with and the rest of the MND community in the back. MND problems at the very highest level.

http://youtu.be/2u7DL4M0Hh8

The MNDA held a reception last week attended by her royal highness princess Anne, who’s the Royal patron for them. It was also attended by people living with MND and some who work and volunteer for the MNDA. I think my invite got lost in the post again. Now I’ve got nothing against princess Anne and it’s good that we’ve got a Royal representing us but I’ve been watching prince William on the telly recently talking about saving animals in Africa. Prince Harry has been on telly many times supporting army veterans who’ve been injured during conflict. He even organised the fantastic “Invictus” games in London for army veteran amputee athletes. When was the last time we seen princess Anne on the telly asking the nation to support people living with MND??? Just a thought! 

Ive read people’s comments about meeting the princess and how much of a privilege it was, which is fair enough but let’s get one thing straight, the privilege should be the princesses meeting people with MND . If I had a choice of going to meet the queen or someone with MND there’s only one winner, sorry Liz but you’ve been jibbed! 

People may think I’m antiestablishment or anti authority, I’m not I just don’t suffer fools easily and I’ll definitely stand up, maybe a bit unsteadily now for what I believe in. 

My mum brought me up to treat every person the same, no one is different to anyone else, if I met a billionaire I’d treat them exactly the same as I would if I met a homeless person. I instill the same values into my own kids. Maybe this is why I’ve clashed with the association so much. They pamper MPs and it clearly hasn’t worked, now is the time to put some pressure on the cowards that stabbed us in the back. The MNDA was founded on good people wanting to do the right thing but somewhere along the way got lost in a snobbish culture and it’s never gone away. My mate Will said it right when he told me “It’s an institution mate, not an association. they’ll never change”.   By the way the board of trustees for the MNDA all voted unanimously against supporting the boxing and mixed martial arts community in helping people with MND. No comment!! 

Wheels on fire.

I’ve had a new wheelchair delivered and it’s shit hot. The only problem we have is I have to get it modified to suit me best because my arms are that weak I can’t control it properly using just my right hand(steady on boys!!) I’ve already taken a coat of paint off the back door with my learner plates on! I’m getting a tray across the chair so the controller can be used in the middle of the tray with both hands. The wheelchair had a bit of a strange effect on our house. It brought home the reality of MND. To ease the tension I said to Jayne “Look, I don’t want this to have a negative impact on the house, so let’s turn it into a positive. I’m not ready to go into it yet permanently, the fact that it’s here only spurs me on even more. I’m gonna try and keep walking as long as I can.” 

Jayne was also worried about the kids reaction to seeing it when they got home from school. So we decided  to lighten the mood a bit when they arrived, I sat in the chair with my back to them, spun the chair around and in true baddie style said “I’ve been expecting you Mr Bond.” 

If you grew up during the 80’s you’ll probably remember the games console Atari. It had a joystick and a button that you held with two hands whilst playing asteroids. That’s what my hand controller will be like. So if you see someone whizzing down the street looking like he’s playing space invaders, don’t worry  as Harry Enfield once famously said “It’s only me”

Please keep supporting the mnd community and raising awareness. Thanks for you’re kind comments and constant support. Mnd won’t beat me. 

Enjoy life.

To be continued…

Mark 

PS. Has anyone got a spare tin of white gloss??? 

Me in the beast with a few working class heroes. 

There are places I remember…  

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Responses

  1. Funny blog mark as always… Love the ‘Bond’ shout 😊 Brilliant that the tories had to back pedal on their barbaric ideas for cutting the PIP benefits. Very deluded indeed as they forget that us people do have a voice and we certainly utilise it to ‘fight the power’ and ‘get up and stand up’

    I’m shocked that you have only been on the highest rate for 18 months of the last 5/6 years. Meanwhile people who blag the system get exactly what they want. 😁😂 🤔🤔🤔

    Another honest insight into living with MND reading your blog. Great to see you in the picture with the 4 legends that ‘shook the world’ I love that sculpture I visit it whenever I can. 👍🏾✌🏽️

    Your a fantastic role model for MND and raising as much awareness as you can.

    Will keep an eye out for you and your new hot wheels. ♿️♿️ Keep up the tenacious fight my friend. 👊🏽Your an inspiration to many and I am proud to say you and Jayne are my friends. 😊

    Big Up Mark
    Namaste kidda 🙏🏼
    Carla X ✌🏽️👊🏽😊

  2. Totally with you on those mean minded back stabbing MPs Mark. Ace to see you with the boys in your new flying machine. Take care. Lizzie X

  3. I love the beast Mark…..you are rocking the look!! I love your post. You speak from the heart….with an understanding those MP’s will never have. They treat disabled people with such disgust…like they are a drain on our society. My daughter is an amazing human being…who has brought such learning to my life. I love her from deep within my heart, i have watched her struggle, watched her in pain…but in all that time i have marvelled at her strength, her determination to carry on with everything that is happening to her. Those bastards will not beat her down, make her feel worthless. You keep on going…you stay strong…you show them. I had the absolute pleasure in working with you in Walton…you are a man with spirit, determination, a kick ass attitude. Thank god you are fighting, raising awareness, if anyone can do it then it was always going to be you. I am proud of you Mark.


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