Wednesday, 26 March 2014

Beyond Barriers

This is quite exciting.

So many of you are wonderful writers - my inbox is testimony to that every day - and I think it is largely the raw truth and passion of sick and disabled blogging that has provided our greatest breakthroughs.

Today, I want to ask any one of you to write for a special project. And for once, we can celebrate the beautiful and the wonderful and the magical.

Those of you who've followed my blog for any time, will know that I had many struggles with my own social security applications. I was refused DLA totally and went to the brink of appeal (and bankruptcy) over 18 months before they phoned and apologised just two weeks before my tribunal saying they had "made a dreadful mistake" that they "hadn't read my file properly, and crohn's isn't always so bad" - yes really.

It took me over 3 years and 13 assessments to finally get any care support in place at all to ease the tremendous and ever increasing burdens on my family.

But in the end, I was privileged to see what happens when the system is supporting you in the way that it should. The way it was designed to do. I won't go into detail here, I'll write my own post for the project, but if any of you have stories of how the support you do get has changed your life, I ask you to take a while to paint that picture for Beyond Barriers.

Did you get a motability car that changed your life? Perhaps, like me, you finally got some home care that revolutionised what you could achieve. Some might use their disability allowance to get to college or volunteer with others experiencing similar impairments.

It's been a long time since we told our stories. Since we inspired and explained and connected with people who have no idea what it's like to live with Lupus or kidney failure or cystic fibrosis o any of the thousands of serious conditions that mean you need a little help to achieve all that you can.

Beyond Barriers should show how a system that works as it should can be so much more valuable than the sum of its parts.

But if we want people to really read them, to be touched by them, to think about experiences they can only imagine, they must be short. That one thing that meant the most to you. A lifetime of insight in just 2 or 300 words. Some must inevitably be longer, but the most successful will be the most innovative. The beautiful poem or the raw, honest anecdote. They will explain something remarkable or convey a complicated emotion in a brilliant analogy. 

Anyone who wants to take part can send me their Beyond Barriers story of how adequate support or care or just a little unexpected understanding has changed their lives in beautiful ways. In a few weeks, I will set a day where we can all tweet them under the #BeyondBarriers tag and share them on Facebook and elsewhere, but for now, if you could just email them to, I can start collecting them together. Please don't use the hashtag yet as if we want it to trend, it's better all in a splash on one day. 

Finally, please, don't be shy. So many of us think we have nothing of any value to say, or we can't say it in fancy words. But fancy words are just sticking plasters for reality. Just write your truth and it will be better than good enough. 

Again, please email submissions to with the title "Beyond Barriers".


  1. Thank you for this being a thing. I sometimes feel like I can't share my stories because ultimately I've been lucky and known how to navigate the system to get the support I need. The permitted work rules and having direct payments mean I have got my first paid work as an adult. This is ahuge deal and the experience and access to training means I have a chance to support myself through work if I get better. I'll definitely be emailing. One question: I've helped others with forms and getting the support they need, can I share their stories anonymously or should I just ask them to contribute directly?

  2. If it hadn't been for #Dani getting the full DLA, both components she would not have been able to live in her own home for her last 4 years. It gave her independence she would not have had. She could go into town by using taxis from door to door. She could afford to go and enjoy the odd little trip to Alton Towers - that used to scare the living daylights out of me as she liked the big rides - the scarier the better - her answer to being told that it was medically inadvisable was to tell us all "what a way to die".

    Without her DLA she would have been even more dependent on us - this she found very upsetting, that I had to clean her house and had to help with every day household chores.

    DLA was a life enhancer - it gave her the ability to be less dependent on others - what grown woman does not want her independence - what grown woman does not want a modicum of privacy - those are just some of the positive outcomes from being awarded DLA meant to her.

    Dani is now with the stars and we no longer need to battle with them at each renewal - at the last renewal she was awarded it for life. But I am aware that had she lived we would be battling with them over all her benefits including her ability to work. So sad all the stories that I hear.

  3. Beautiful guys, thank you so much. I've had several by email already too, which is wonderful.

    Rowan, it's a difficult one. If you can tell a very general story and the person won't be identified from it, then I should think it's fine. Fictionalising it if you know what I mean.

    But if you thought someone might recognize themselves from it and be upset, better not. You can certainly recommend that anyone at all takes part. I'd particularly like to hear from carers, people with learning difficulties or those not often able to share their stories.

  4. Sorry Sue - are you able to use the what I wrote from here or would you like to write a little more I can if it will help. x

  5. My advice to you all is...stay strong and have a positive focus. Things eventually work to our advantages in the end. Come 2015 The Coalition/The Tories will be gone forever. They will no longer get in again. We also must educate the future generations of youngsters. We must educate them to know The Tories tell stories. They tell lies continuously to The Public. We must all learn from The 1970s and 1980s/early 1990s. Nothing will ever change with them. We are rising and becoming stronger together everyday.

  6. nice to hear all is well oya and thanks for a good well judged post :)

  7. Hello Sue what an inspiration you are. My son and I are battling with the system. I've found that you have to be 'really astute' when filling their forms in - I get really passionate because unless you know HOW to fill them in, you are not in with a chance of succeeding with your claim, I've just been awarded mine - thankfully, not so lucky for my son, but I carry on to help him get what he deserves. Carry on the good work and keeping spreading the word for those who are vulnerable in our society.