Bloody Skegness! Blogging Against Disablism Day #BADD2015

When I was a young adult..

At first I was fairly scared, because I didn’t know what I wanted to do because I couldn’t read or write. My special school didn’t teach me to read and write, they only found out I was dyslexic 2 weeks before I left school. I be honest, I didn’t know what I wanted to do when I left school, because nobody ever asked me what I wanted to do. The only thing I could do was retail work.

I went to college first and I didn’t enjoy it because I couldn’t understand things right because of my reading and writing. Then I went on a YTS scheme and they put me on a retail course, it was very difficult to do it. I didn’t have proper support for my reading and writing. I felt very down a lot because I didn’t know what job I wanted, no-one ever asked me, no career day, none of that. I didn’t know what I wanted to do. It got more clear when I was older, when I started living at Keyring. Before that I lived with my brother for quite a long time. At first it was ok, but over time he took over everything like bills, he even banned me from my own kitchen in case I burnt something! He did all the cleaning and cooking. I didn’t like that and I wanted to do it. It made me feel frustrated and angry to not be able to look after myself. My brother worried I’d lose my money or spend and not have any left to pay the bills. I would never do that, but he didn’t have the confidence with me to know that and it was very frustrating. Me and my brother was arguing a lot about, I wanted to live on me own and an advocacy organisation called ROP told me about Keyring. I wanted to live on my own and to learn to be properly independent without anyone taking over for me.

When I was about 30 I started to be able to dream of a life like the one I have now…

At first living on my own was fairly scary. I had a great support worker – he helped me to do an action plan to work towards what I wanted to do, like budgeting my money, going shopping, going to the bank and other everyday normal things. My support worker and other managers in the network would support me at the time I moved in, but over the years I got used to it bit by bit. It was tough at first but bit by bit the support worker, the manager and my mother and my friends helped me to be the person I am now.

The hardest part was…

People’s attitudes. Some of my family were worried I couldn’t do it, because before I couldn’t live on my own, have a proper job or kids. Now I live on my own, I work and I see my daughter.

If you want to live independently…

Have faith in yourself, if you get the right support like I did it can be done. The best people to support you are people like myself who have been through what you have. People with learning disabilities can be very good support workers; I supported children to go to the bank, they wanted to open their account but they were scared. I did an action plan with them to build their confidence up. They couldn’t do it overnight but I supported them step by step and now they help other people with learning disabilities to learn the skills they want to. I didn’t know how to put plugs together, one of the gentlemen I supported taught me to put a plug together. Everyone has got skills, but often they don’t realise they’ve got them.

When I was young, when I was living with family and having to do a course without support, I never dreamed that one day I would be planning a holiday on my own to Thailand – I would’ve been lucky to get a daytrip to Skegness! I hate that place, its shit. I had to go there a lot – it’s like watching paint dry, bloody Skegness.

By Shaun Webster, supported by Kaliya Franklin 

Lucy Frances Glennon 3/12/1985 - 29/1/2015 @LucyTweeting

“The Daily Mail must hate me. I have (foreign) carers making my sandwiches”

I’d thought most campaigners knew Lucy, even though she’d been too unwell these past few years to write much, but perhaps that is just because, for me, Lucy was such a huge part of campaigning. She was involved with debra UK often attending awareness raising events and meeting all sorts of celebs. Jon Snow and his snazzy tie & sock combo were a big hit, Cameron less so. I could never do justice to the Lucy story about the Prime Minister, Sean Bean and backsides, so I hope one of her other friends will share that. 

(Updated thanks to Kate Spector - Lucy's storify of (not) meeting David Cameron. The photo speaks for itself)

Lucy sat in her wheelchair at a Downing Street event, Sean Bean studiously looking at his nails and Cameron ignoring everyone

In 2009 Lucy set up a group blog to review tech products for accessibility - the reviews we wrote were not extensive, but Lucy managed to bag herself all sorts of free tech which may have been the whole point! She loved food too – that and technology were her two big writing interests.

“Jamie Oliver's remarks about people on benefits eating cheesy chips is unfair. I'm on benefits and I prefer chips with aioli.”

For the first few years I knew Lucy, through blogging and later twitter, that’s what we talked about. We bonded as we both had connective tissue disorders – they had vastly different impacts on our lives, but still all down to fundamentally workshy collagen. We traded advice on technology and pain control.

But then, in 2010 things started to change for Lucy. She was one of the first and most impacted by the Coalition’s welfare ‘reforms’.

Initially I assumed Lucy would be ok. So did Lucy. David Cameron made many promises about protecting the most vulnerable. And there was no arguing that lovely, clever, tough little Lucy was that.

When the government changed and immediately announced sweeping cuts to social security, Lucy was one of the first people to get involved with The Broken of Britain and later the Spartacus report. Living in Camden she was able to attend The Hardest Hit marches in person, nag all her journalist contacts and wrote as many articles as she could.

Disability and welfare campaigning have become a powerful movement in the last couple of years, but earlier in the parliament there was just a small group of people desperately trying to get the message out and all too aware that not all of that few were guaranteed to live long enough to see the next election.

Lucy was one of those I worried about most. People with Recessive Dystrophic Epidermolysis Bullosa die so very young and that made Lucy’s situation so much more urgent. She didn't have the luxury of years to wait for things to improve.

There are two stories of Lucy’s to be told; the strong young woman with a naughty sense of humour who faced life full on with an awesome dignity, and  the terrified girl who feared losing the independence and life she fought so hard to gain. I have agonised over whether it was right to tell that second story here. But Lucy wanted to tell her story, it became the focus of her writing both in the articles she published on The Guardian and the emails she sent. If I am honest, what Lucy went through drove much of my campaigning. She was one of the first to be impacted by the government’s housing changes and it made it very clear that whatever promises had been made, the government had no real intention of protecting the most vulnerable. How could they when they were doing this to Lucy?

Lucy hated the whole butterfly thing and she was right to. Although its an understandable analogy that people with EB are sometimes referred to as ‘butterfly babies’, their skin and internal tissues being more fragile than a butterfly’s wings, its schmaltzy and Lucy was never that. Witty, cheeky, and the sweetest character, but never schmaltzy. She was more like a little wave, her incredible force of strength hidden under the surface so all you see is sunlight glinting as it ripples across a pond, changing everything and everyone she came into contact with for the better.

EB is a uniquely painful and cruel condition. The skin and internal organs are so fragile that even a light knock or bump can cause terrible trauma. Morphine is required for things like nappy changes and parents are unable to indulge their natural instincts to hold their babies as close as they want when they scream with pain because it can damage them.

It was typical Lucy that she referred to the fentanyl suckers prescribed for pain as her ‘crack lollies’. For a while during 2010 and 2011 they helped keep the worst of the pain at bay and Lucy poured her characteristic determination and passion into writing, calling out politicians for an increasingly common bullying attitude towards those on disability benefits.

But what not as many people knew was the extent to which Lucy’s life had been thrown into turmoil, fear and confusion by the changes to housing benefit. Although she became entitled to a two bedroom rate, once the rate reductions had taken effect that was less money each week than she had previously received for the one bedroom rate and Lucy knew she had to move. Leaving central London wasn’t an option, Camden was ideal for her to reach St Thomas’s hospital quickly. It was also vital for her Dad Ted, as it meant he could get from the family home in Rotherham to Lucy in not much more than 90 minutes. She couldn’t move to a cheaper suburb an hour or so away, that was too far from the hospital she needed and too long for her Dad to reach her when she needed him.

Around the same time she had to reapply for Disability Living Allowance, the DWP lost her first set of forms and she didn’t know where she was going to live. This was all in 2011 and the wider understanding of the impact of these cuts, in particular how to deal with them on the frontline, was not really off the ground. But for Lucy, and those of us frantically trying to find a way to help her, the impact was all too obvious.

Lucy wrote this to David Cameron as part of a campaign on the 17th September 2011.

“I have never felt lower.
Because of changes to housing benefit, I've been reduced to a worrying mess. I face the possibility of being moved out of my flat that has an extra room for when I need a carer because the local housing allowance is dropping so much.

I'm entitled to a two-bedroom rate of housing benefit, but it's dropping so much, it will be lower than the one-bedroom rate I'm currently on.

I'm too severely disabled to work. I cannot walk far, my condition is extremely painful, and I face unpredictable fluctuations in my disability where one day I may be unable to swallow properly, be able to get onto my feet, or even see properly. It is difficult enough to look after myself on a day to day basis, yet you are making it harder.

I receive DLA, Income Support and even Severe Disablement Allowance. Yet despite being acknowledged as one of the most deserving recipients of housing benefit, the office who deal with my benefit do not understand why I am to be one of the worst off, with no exception.

This morning I listed ten items to sell on eBay. These were presents I received last Christmas and on my last birthday. The items I am selling are two well made winter jumpers, some DVDs of films I enjoy, and three handbags (from high-street stores). I am looking around for other things to sell, as times are hard enough without the impending drop in housing benefit. I don't have anything of big value I can sell, and although I love the clothes and watching the DVDs I am selling, I have nothing else nice that anyone else would want

You and George Osborne said you would not leave the infirm without help. Well you've let me down, and many others too. You have gone back on your word, and you are no man of honour.”

As always Lucy put it perfectly. Where is the honour in promising to protect the most vulnerable, a promise Lucy had understandably thought would apply to her, when it was clearly a lie? A lie that led to a beautiful young woman in the last few years of life feeling so afraid about how she would pay her rent that she listed her Christmas presents on eBay.

Quietly, behind scenes, people rallied to help. Not the politicians who made those false promises, but others. In typical Lucy style she described her MP as

“like a nice old bloke (a bit like the other Attenborough brother who does the acting). He wore a cuddly blue jumper too (I didn't cuddle him).”

We got her into a trial housing advice project being run in by neighbouring constituency, her case was raised in the House of Commons, huge amounts of medical evidence were collected, checked and checked again. Lucy’s condition spoke for itself, but still we got it all reviewed by an Atos assessor to make sure it spoke the language of the DWP.

Eventually the housing situation was patched together, her DLA approved and Lucy moved to a more accessible flat where she could still access the beautiful Bloomsbury squares she loved in her powerchair. But that fear and anxiety ruined a whole year for her, a year just as she was becoming ever more frail, a year she didn’t have spare to be spoiled.

What happened to Lucy is as much a story of how life changed for disabled people during the 2010-2015 Conservative/Liberal Democrat government as it is a story of a remarkable young woman who in her all too short time here demonstrated huge honour and dignity in everything she did.

I’ll never forgive the damage this government did to Lucy – not so much the problems with her housing, or money shortages, but the brutal lesson they taught her about value, worth and honour.

But I’ll remember Lucy, as she was the last time I saw her – speeding through the Brunswick Centre in her powerchair, too fast to catch up to, as she would have described it 'flying like a squirrel on wheels', crack lolly in situ, shouting ‘go faster you piece of shit’.

Photo Credit - Sarah Lee, The Guardian. Photo is of Lucy Glennon a young woman with pale skin, dark hair, glasses and big blue/grey eyes

“I can confirm it's not possible to twerk in a wheelchair. It looks more like you have an itchy backside. You're welcome.

Gary's blog about working together and being off sick

I have just read Kaliya’s blog, I really do feel for her,  as well as a colleague she is also a friend and work wise we get on like Bread and Butter.

I know about being of sick in the past when I regularly had epilepsy and discolating and fracturing my shoulder and had to have to off for six weeks, the jobs I had no flexi-hours. I was sometimes stayed in hospital until I got better I also had district  nurses to clean me as I could not wash myself.

People might say it’s un fair to have more sick days off or even unlimited time off for being sick, because it’s not equal opportunities. I would say it’s just un fair for not having more sick time off or unlimited time off, we cannot help with our disability.

I am a proud person with disabilities as well as having epilepsy I have a learning disability, mild autism even though I might not of being tested for this ( I went to an Autistic School in the late 60’s) I also get anxiety problems when things go wrong or filling  in forms. I have had epilepsy since the age of 3, I still think people still not understand it. I usually get epilepsy if I am over tired, but I always think there is not enough days in a week.

I am a bit of a workaholic, do not just ask me, ask Kaliya as well, she tells me I am doing to much. I do have a great supporter in Michelle who helps me with my work, she is a friend to me as well, she helps me with anything complicated like form filling in, diarizing and travel ect.

I have got a great team of people from Housing and Support Alliance, I do not know what I do with out them and my network of people I have known for years, and finally my family who can tell what is being happen with in my job which I love doing and discussing the year ahead with Kaliya, I do not make decisions without her, we are a team.  

On working. And sleeping. Mostly sleeping..

These days, all I can think about is sleep. When can I go back to bed? How can I fit in a few more hours? The January dark and cold doesn't help, but even on a beautiful sunny morning like today, going back to bed is all I'm looking forward to. I've only been up 20 minutes. 

I've been in work for about 10 months. I think. One of the most difficult challenges at the moment is that I can't think properly. That's fine when it just lasts for a couple of days; but this has been months. More months than I can count without losing track. I know it was October things started to really slide, but my brain won't function sufficiently to work out the months between then and now. 

I did start picking up a bit. But then I went to London for work, the taxi I was travelling in hit a pothole and I ended up stuck in a London hotel room with spinal dislocations and whiplash. Then, well, it's winter. So I got a bug. Then a chest infection. Then the bug just didn't clear. Somewhere in all the middle of that it was Christmas and New Year. Apart from a brief few hours with family, they went pretty unremarked. Mostly because of the 'when can I sleep again' thing. Did I mention the sleep thing? 

The narrative surrounding work is that its good for you, good for your health even. I'd like to believe that. I'm sure its true for many people. Work has definitely been good for my mental health. I absolutely love my job. Working with Gary Bourlet and the other self advocates we've supported is a pleasure and enormous privilege. It gets results too. One of Gary and Shaun's ideas was warmly received by the Employment Minister who is looking into possibilities of making it work. 

So yes, the job is great. My colleagues are fantastic. I'm employed on an incredibly flexible set up. I can't imagine a better employer. In theory I have the freedom to work whenever I want, so long as I get my 16 hours a week done. And of course I don't have to do them all in the one week. But the convoluted tax credits vs means test benefits rules mean I can't reduce them to say, 10 hours a week. Then I'd have to go back onto ESA. And then apply for permitted work. Politicians talk alot about how Universal Credit will be the answer to all this. But then Universal Credit functions about as well as my spine. So I shan't hold my breath. 

Which was all ok. But then it was summer and I had a bit more energy. And the upper spinal dislocations weren't quite as bad at that point. But they are now. Just holding my own head up is hard work. I've seen babies with better head control than I've got. And after months of failing to be able to find the right words, to not be able to write, or to even think coherently..they're sort of coming back. A bit. 

And as it turned out, there are certain types of brain damage that go hand in hand with the kind of spinal trauma I'm regularly experiencing. So having wandered around muttering "I've got brain damage" for months might've been more accurate than I'd thought. 

When I tell people how hard this is, how at the moment all that's keeping me going is the thought that if it all gets too bad I can go back on ESA, but that I really do love my job. They say that's sad. 

But they don't really understand. Not any of the work is good for you people. How can anyone possibly understand what this is like without being in a similar situation. Or how, even with the most supportive employer in the world, how the pressure just increases as you fall further behind the tasks you need to do, but your brain just will not work sufficiently to order or achieve anything. My employers don't put any pressure on me. But its there. Inside me. And there is an election on the way. That sort of imposes another timetable on everything.

Because we all want to believe that work is good for people. And in lots of cases it is. Apart from when it isn't. Even when I'm doing well and feeling ok, I'm managing work by not wasting spoons on anything else. Including washing and dressing. I am not convinced that is good for me. Its certainly not good for the people around me. But given I'm so exhausted I don't want to see, speak to or do anything, the dodgy smell is less of an issue than it could be. 

There's alot of talk amongst disabled campaigners about moving from the Support Group to work. The holy grail for everyone is 'flexible working'. I know, I spent years believing that if I could just get the right job, with the right set up, then working would be possible. 

And it sort of is. So long as I do absolutely nothing else in my life. So long as I use my 4 or so functional hours each day on nothing but work. This weekend, thinking I was getting better I went out for a few daytime hours. It was the first time since the London whiplash incident. The outside felt jarring, surreal. I went to a meeting, which if I'm honest was more work than not work, then went to bed. The next day I met an old friend for coffee. Then I went to bed. Then I started projectile vomiting. And it didn't stop. Splatter pattern ratings were assigned. As ever, when vomiting, the force pulled at my spine. All the good work my physio had done two days before was undone. 

Spoonydoc has written this excellent piece in response to the current discussion about moving straight from the support group to full time work. It really is excellent, so do read it. But I can't remember the point I was trying to make anymore. I've been writing for 20 minutes or so, and awake for an hour. I'm so tired nothing will keep straight in my head. I need to go back to bed. But I also really do need to use some spoons on getting clean. The post vomit smell is bad enough for a day. Beyond that, its beyond rank. 

But showering takes energy. Energy I simply don't have. 

What I need is just to turn everything off. For months. To sleep as much as I need, to focus on the routine of getting washed. At least more days than not getting washed. To eat well, to spend time on physio. To try and find some form of exercises that will assist my feckless, workshy neck muscles to remember why they exist and hold my bloody head up for me. 

But that's the key difference between paid work and being on an incapacity type benefit. Even if you're doing lots of voluntary work..voluntary is just that. When you need to focus on your health more than anything for an undefined period...well, you can. You have an income to allow you to do so. Sure, its not much, but unless you've also got an enormous debt, it is usually enough to keep a roof over your head, have enough to eat and pay the bills. 

Other people tell me this is really sad. I already know that. I live it. I live with the sadness of never having the energy to do anything. Of knowing that I'm constantly irritable and unpleasant to be around. With the fear that what I'm doing to my body will ultimately result in a spinal dislocation so severe the cognitive impairments it causes will never go. That the voice loss won't come back. Oh and the quadriplegia risk. 

I love my job. I quite like working really. Or I think I do when I'm not so exhausted. I certainly love the work Gary and I do. I must do. I don't do anything else. 

But please, don't make the mistake of thinking that this is easy. Or that work really is good for everyone's health, we just need to think of work differently. Because frankly, that just isn't reality for some of us. 

There was probably meant to be some sort of concluding thought to this. But I can't remember it. And I need to go back to bed. 

DaDa Fest - Working Lives - Here and There Press Release

Next month as part of the annual DaDa fest in Liverpool there is a photography exhibition of disabled people's working lives, including a photo of yours truly taken by Adam Lee. Details of the exhibition below

DaDaFest - Working Lives - Here and There Press Release