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Carl Tilson’s ego blinds his true advocacy

Carl Tilson is one of the loudest voices in the UK and has his finger on the pulse of Duchenne Muscular Dystrophy on a daily basis.

Born with Duchenne Muscular Dystrophy, Carl Tilson has utilised social media as a platform to bring about change to the industry in the UK, but his increasing attitude and sense of right over other disabled people is getting some offside.

Branding himself as “Relentless” in 2015, Tilson’s adventures on social media have been inspiring but always seem to have a strong and obvious undertone of self worth, entitlement, and increasing arrogance.

Tilson says that he represents the MD (Muscular Dystrophy) community, this is despite his failed attempts to access experimental drug treatments to cure MD in 2013/14 where he took it all the way to television to air his story.

Tilson is a fine advocate – there is no denying that.

But there are many fine disability advocates all around the world, many of which make actual change without once playing the victim of disability.

Anyone who says Tilson doesn’t want just as much attention, heralding, and popularity as he does change for the disability community is lying to themselves.

When questioned by The Real Michael Pulman on Twitter yesterday, Tilson responded with the following:

“I will say what I want, if people don’t like it f*ck them,” Tilson said.

When The Real Michael Pulman claimed that there were other advocates around the world who work just as hard, Tilson responded with “don’t preach to me”.

Rather than answer his critics, Tilson blocks them from social media, attempting to shut down the voice of anyone who questions him.

It is clear that Tilson’s ego and want for media success is more important to him than his want to help society increase the rights of disabled people, something his brand of “Relentless” claims to do.

It is false branding, false advocating, and a slap in the face to many strong and respected disabled people who advocated up until they could do so no more.

11 comments

  1. No. It is not arrogance. It is confidence and a great attitude to have. He’s fighting a very important battle and is fighting it not only for himself but for other boys/men with this condition! He’s a very strong willed man and I admire him. My family admires him, a family who have a 8 year old boy with Duchenne. I do not like this article. How dare you. Carl Tilson is a hero, my hero.

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  2. Well said Aleka, I am Carl Tilsons brother and I have seen him go through a hell of a lot including nearly losing him when he was 18. To have some halfwit keyboard warrior slate my brother for his efforts is not nice. Michael Pulman you have no idea who Carl is yet you slate him personally, this lad has raised a lot of money and awareness for the cause and he IS Relentless which I and lots of others admire. Shame our Politicians don’t have Carls attitude and resolve. I ask you why you feel the need to attack a defenceless young man who is being kept alive by machines??? Does it make you feel more ‘adequate’?
    If you feel the need to question him about his tactics give him a call don’t try and make a name for yourself on social media with your petty twitter and social blogs, only a coward hides away!
    Or alternativley as a ‘professional’ journalist why not meet Carl and I for an exclusive interview? We would be only too happy to meet you.

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    1. Thanks Lee and thanks Kristian 🙂 This angers me so much! Carl should not have to excuse himself because he is disabled. Neither should anybody else. If you mess with Carl, you mess with all of us and this man will regret what he has said. Does he think this will bring Carl down? If so, he’s wrong. As Carl said on Facebook, haters gonna hate.
      Relentless will never stop!! Carl is a great man and our friend.

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    2. I appreciate your comment. I have a good idea who Carl is as I am a fellow advocate, fellow disabled person, and also work hard in this field. Never have I claimed to represent us all because we all have our own individual wants and needs in order to live our own disabled lives to the best of our individual ability. Carl has raised a lot of money and awareness, others do admire him for that, but I felt the need to question his attitude due to his postings on social media, postings that are anything but inspirational – the truth is they are attention seeking, self hype wanting, and superstardom egomaniac. Nothing about this story made me feel any good whatsoever. I don’t need to make a name of myself, and I am no coward. I would dearly love to interview you and Carl, but as you will notice, he has chosen to hide away – yet again. Please see this video – https://www.facebook.com/michael.pulman/videos/vb.100000558361504/1155628811132387/?type=2&theater

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  3. I have known Carl nearly 25 years class him as my brother is knew Carl when he could walk run around do the things you take for granted, unfortunately for Carl he’s not had the easiest of times with his condition and he won’t lay down and let things get on top of him it’s not in his nature.
    He is strong willed and facing MD face on and pushing himself to fight for a cure, he is am inspiration to a lot of people!
    Carl needs help and support to fight his campaign against MD not nasty self minded articles that represent nothing about him, go and spend a week with him and his mum and see the struggles he puts up with from day to day and still has his fighting mentality then and only then post an article about him it will be a hole different type of story believe me

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    1. Actually no I wouldn’t, mike knows first hand what Karl goes through..not from outside eyes like you, but from within first hand. Michael has sma, and has watched his best friends deteriorate and pass from this nasty affliction. The fact that you think that what Karl has gone through and continues to go through entitles him to be egotistical shows a very narrow world view..mike understands better than any of us ever could what Karl faces each day, and is merely pointing out that regardless of a persons situation to act in such a manner is unnessecary and takes away from the message Karl is trying to put across

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  4. My son has dmd and Carl is an inspiration to us as a family. This article is wrong on so many levels, Carl is fighting duchenne, a disabling condition that without a suitable treatment or cure will shorten his life, he advocates for duchenne sufferers as it is a very specific disability. Our boys do need to fight for their rights, but the right to access treatment and faster tracking of treatments, the issues around duchenne are not the issues of other disabilities. Do you know anything about duchenne Michael? Because if you did you would know how offensive it is to say Carl ‘failed’ to access treatment last year, you have no clue how little treatment is on offer and how desperately we cling to hope of something in time to save all our boys and men, we are a family, a community and Carl speaks for us and now I speak for him.

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  5. Michael,I applaud you for writing such a courageous and truthful article. In my humble opinion, you have been way too kind to Carl in describing him. I also suffer from Muscular Dystrophy back in the United States, but would never want that obnoxious windbag who calls himself Action to ever advocate for me in any manner. Before he banned me from his Facebook page because he couldn’t handle my calling him out in his pitiful attempt to secure the sympathy of others, I found his posts to exhibit an egomaniac in the truest sense of the word and a coward who hides behind his wheelchair when confronted with an opposing view. Keep up the great work, Michael, and don’t let Action’s delusional family and friends intimidate you in any way.

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  6. I love it ” I knew Carl when he could run and walk around and all the things you take for granted”. If you knew a single thing about Mike, you would realise he has SMA and has never been able to run or walk around, least of all take those things for granted! If you knew him you would also know that mime has watched many of his best friends deteriorate and pass away due to dmd, and that he is a speaker for the rights for disabled persons and also a board member for the muscular dystrophy northern branch here in nz and has more of a personal understanding of duchenne muscular dystrophy and like afflictions as it is a reality he lives with every day..to call a young man who has achieved so much a halfwit shows your total lack of understanding for who he is and what he stands for..but I suppose any “halfwit” is invited to speak publicly with the prime minister on the topic of disabled rights, right!? Idiot!! What Mike is trying to say, for those of you with the intelligence to see past your anger, is that all the things someone has been through do NOT give them the right to become arrogant and egotistical..and we should not ignore these things must because of his condition. I actually believe Mike is the perfect person to broach such a controversial subject as he IS in a position where he can do so without anyone of any intelligence level using the disability card as an excuse. The difference between Mike and the people dissing him via comments is that he does know first hand what a person with such an affliction goes through on a day to day basis, he has overcome this and made a life trying to help everyone and anyone he can with a disability, and he basically unlike the people on here so angered by his opinion is qualified to give a totally unbiased view, without being clouded by emotions and other issues that are totally irrelevant to what he is saying! If you want people to actually listen to your opinion, gathering facts is always a good start…and its obvious that this hasn’t been done by those slamming mike or he wouldn’t be having such ludicrous statements made about him..Id also like to add that I’m very proud of you mike! Your responses to such dimwitted comments about you show class and decorum far greater than those attacking you.

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  7. Well he’s dead so you needn’t worry about his behaviour or whatever this post is meant to achieve (which is precisely zilch). If he has a Facebook group as admin he has the right to ban people, yeah it sucks, but it’s not the end of the world, no he’s not some angel, no one is. I don’t really care if someone is arrogant or has an ego, as long as they get the job done of advocacy and representing a viewpoint of people getting access to medicine that might slow down the progress of MD. You said something, he didn’t like it, blocked you or banned you, most people would just I dunno move on. But nah you gotta just write a post with name calling, you could just take the high road and accept that not everyone will meet your lofty standards, that the disabled population has a wide array of views and personalities. Wowee he told people to go fuck themselves, well then he just like a lot of humans with ya know moods and emotions. He’s not Gandhi, he’s not some angelic role model for disabled people, he was a good representative for disability issues and I hope he took some pride because tbh no disabled person is under any obligation to advocate or do anything for disabled people. To me he was resilient despite overwhelming evidence that he was gonna die at a fairly young age, I don’t look to him for personality advice, I look to him and to you for inspiration in your actions. I’m not inspired by this post. Your post is the most pointless thing since the book ‘how to learn french?’ was translated into French. I do hope no one ever blasts you on the internet like you did, because quite frankly it shows that if Carl did have some personality flaws, by the post you made, you certainly do and so do I. And what do you expect from his family, really, if someone said this about my brother regardless whether it’s true or not, I’d go off my fucking nut. It’s bang out of order. Advocacy is not a competition, it’s like everyone mucking in and using different techniques to get the word out.

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