I have been invited to speak at the 100 Voices conference hosted by The Brandon Trust in Bristol on saturday. It's the first conference of it's kind, so that people with learning disabilities can choose what they want to be on the Brandon Trust agenda for the next 12 months.
If anyone would like to watch the conference it is being live streamed here and I will be speaking at approximately 10.15am. Expect lots of noise, bubbles and fun!
It’s been a looooong weekend and both Sue and I are on our respective trains home utterly spoonless and exhausted. Having just found out my train’s massively delayed because the signalling equipment and cabling has been stolen it’s pretty much the final straw and there will be tears before bedtime.
I could tell you all about the politics and the campaigning we did this weekend, but the real story is in how we got around and what happened to us. The whole premise of the Welfare Reforms and in particular the new Personal Independence Payment is that now we have laws about accessibility, benefits aren’t needed in place of that. The edited highlights of two spoonies alone in London for a weekend go to show how very far from the truth that is and just how much needs to be changed for sick and disabled people to be able to compete on an equal platform in life, let alone the workplace.
The journey here was relatively uneventful, Scousers are incredibly helpful people so it was no surprise that a lady passing by insisted on helping with the case all the way through the station whilst my neighbour pushed me in the wheelchair, or that after several slightly dodgy jokes that the Burger King man sent me away with enough fries to feed a family. Assistance was booked, turned up and all went well.
Until we got to the hotel. The very pretty, but very, very inaccessible Hotel Russell in central London. The front entrance to the hotel is lovely to look at, as is much of the inside…but you only get that view if you can walk up a flight of marble steps. If you are a wheelchair user you get to go all the way around the block to the back of the hotel. There there is a delivery entrance with intercom… far too high up the wall for a wheelchair user to access. The videos speak for themselves, but for those who can’t see them the trip into the main hotel involves a hair raising ride on a pallet lift and trip through the kitchens, past the storage carts etc. According to the very embarrassed and apologetic staff members it was because it’s a listed building and that meant not being able to alter the front entrance. I would have considered that fair enough had there been ANY effort made to make a proper accessible entrance around the back of the hotel, but as they hadn’t it’s obviously just an excuse for ‘we can’t be arsed’. I was horrified to hear from other wheelchair users on twitter that they had had that exact same experience at the Hotel Russell three years ago and been assured it would be remedied when the hotel was fully refurbished, which it claims to have been recently. The only positive about the Hotel Russell was how lovely and helpful all the staff were. It’s obviously a frequent issue as on one of our tours through the bowels of the hotel we were introduced to the ‘big boss’ who didn’t even bat an eyelid at the wheelchair route we were being forced to take.
The accessible room was prettier than the route into the hotel…but it wasn’t exactly accessible. It was just a normal room with a decent sized bathroom and some grab rails. The contrast of the braille on the room number plaque made both Sue and I giggle, but the fact that we were completely unable to get in and out of the hotel alone did not have such a cheery effect. But, we’re spoonies so we made the best of it, ordered room service and got on with planning for our seminar.
Saturday morning we had to be at the Institute for Education bright and early. After a disastrous trip to the hotel’s business centre which the staff insisted had printing facilities we found three non functioning computers and a broken phone meaning we couldn’t call for help. So we set off for the Compass conference which we were assured was just around the corner….it was. But unfortunately we were directed the wrong way so by the time we arrived at the Institute for Education we were both knackered but Sue who’d been pushing me was beyond exhausted. I don’t think we can thank Left Foot Forward and particularly Dan Elton enough, not just for taking a chance and hosting a seminar about welfare, but for being able to cope with two hysterical women, one sobbing, one shaking and get us calm and organised.
After all that we decided to sit out the morning’s main speeches, we were just too tired and sore to even contemplate it and just took it easy until our seminar time. We’ll post separately about the seminar, but suffice to say it was described as the most interesting seminar on welfare ever. Which obviously has nothing to do with the crawling under a table or shoeless presentation style.
Sue sensibly went for some lunch and a lie down after that bit, but there was another lecture I wanted to see and so the very kind Neil Coyle of Disability Alliance took over as wheelchair pusher. Although I’ve got some mobility the conference centre was too big for me to move around so I was dependant on whoever I could find to charm/bully into pushing me around…including a member of the House of Lords….thanks by the way Lord Glassman!
Eventually we were done seminaring, speeching and politicking and all decided to head off to the pub. I’d like to thank Declan Gaffney for pushing me around so much of the day…and to say I hope he’s recovered from the trauma of launching a small, bendy wheelchair using woman out of the wheelchair and onto the kerb in such spectacular fashion that even in London people stopped what they were doing to gape open mouthed at the sight. I giggled when I hit the floor…because that’s my response to hurting myself, especially in public and was so panicked about being on the floor with the wheelchair sticking into the road that all I could think about was that. Declan managed to scoop me off the floor and off we went. It was only later when the adrenaline wore off and the pain started that I realised I’d dislocated my whole femur from the combination of force from hitting the supposedly lowered kerb and falling onto my left knee. There were copious amounts of prescription and non prescription medication consumed after that!
Sue and I were completely incapable of returning to our hotel alone after that. We’d both like to thank the fabulous Charlie Covell who took over as chief wheelchair pusher, got us back safely and went off to buy us dinner to eat in our hotel room as we couldn’t possibly have gone anywhere or done anything.
This morning we had to again brave the terrifying pallet lift, but were helped by hotel concierge Steven who organised things so well it wasn’t as much of a problem for myself and especially Sue. The cabbie went out of his way to help us and dropped us off at what was supposed to be the easiest entrance to Euston. And it was…just a few steps in and we spotted a staff member wearing a Virgin Trains uniform and asked him to get us some assistance.
So…the man pushed us into what we thought was a broom cupboard, closed the door on us and went off, claiming he was going to get mobility assistance to help us. We sat there a bit bewildered but not as confused as the poor man whose tradesman’s office it turned out to be who was very surprised to see two women, one wheelchair and luggage parked in his office. He chatted away to us until it became clear the other man had literally dumped us and not even bothered to let anyone know we were there. The gentleman insisted he would take us where we wanted to go himself and was joined by an incredibly apologetic employee of Virgin Trains called Justin Stockwell who could not have done more to help us if he’d tried. Justin and the other man pushed me and Sue out to the place we intended to eat at, made sure we were safe and arranged to meet us himself at the mobility assistance place and put me safely onto the train.
Which is when Sue and I hit our final straw. Exhausted, hungry, in pain, unwell and verging on tears we both desperately needed to eat, but I’d managed to pick a place that Sue couldn’t eat the food at and I couldn’t eat at any of the places we could see. Somehow, neither of us know how we managed to stagger to an adjacent place and order some food in time to gulp it down. But that was it, we didn’t even have the energy to manage to get ourselves, two cases, two laptops and a wheelchair back into the station.
Fortunately Sue spotted a British Transport Policeman who came to our rescue and pushed me in to meet Justin so that Sue could get her taxi.
I was escorted onto the Virgin train by the still apologising Justin and the lovely transport policeman and upgraded into first class. The train manager and Justin explained how to make a formal complaint and said they will be too and made sure I was safe as did the policeman before leaving.
Just imagine trying to be fit enough to go to work every day when you're already sick and/or disabled...and then going through that kind of performance to get anywhere. It's what the Welfare Reforms are banking on us being able to do...
Being spoonies....our plans haven't exactly gone to plan so far...
As of yesterday we still didn't know if Sue was going to be well enough to travel, let alone string a coherent sentence together on Saturday morning. Crohn's + virus + chest infection + antibiotics + steroids = Sad Suey. This presented us with a slight problem, whilst either Sue or I can cover the subject as a whole if necessary Sue was also appointed chief wheelchair pusher. If she wasn't able to make it to London I was in trouble...especially when it occurred to me that alone I don't have enough mobility to make it in and out of the hotel. Fortunately Sue is well enough to make the journey, just in time for my ability to travel to be in doubt.
At six thirty this morning I gave up on the idea of sleep altogether and started to vomit up the medications I'd spent all night throwing down me in the hope they'd induce sleep. By 7.30 Sue and I were on the phone doing our 'oh god' routine. It's never a good sign when all you can say is 'oh god' and 'huh?' particularly when those are interspersed with puking breaks.
The thing is...we've been really sensible me and Sue. We've known this date was coming for weeks, we've planned to travel the day before, spent the whole week resting in preparation and employed our specialist disabled organisation skills to the max to ensure everything runs smoothly. Whilst we might be able to control bookings, what we want to say and how to say it, the one thing we simply cannot control however hard we try is our own bodies.
And this is really what 'fit for work' with a fluctuating chronic condition means. I might stop vomiting in another half an hour or so and be tired but fit to travel. I hope so, I usually do. But on the other hand I might not. And there's no test in the world that can change that, no possibility of health improvements to reassure an employer, it just is what it is. None of us with these variable conditions can control them, whatever the latest trendy biopsychosocial model of "it's all in your head" the DWP have snatched upon as proof we can be removed from our benefit dependancy and forced into jobs that don't exist. Day by day we just don't know and can't control our conditions. So really....should an employer be expected to?
As the Welfare Reform Bill moves from Parliament to The Lords, I sing (yes sing!!) Janis Joplin-With-Flu version of "Oh Lord, won't you buy me a Mercedez Benz" Did you ever see a singing rights campaigner with hair this bad?
Lyrics
M'luds won't you help me, with Welfare Reform?
The sick need protection, their facing a storm,
Worked Hard all our lifetimes,
Paid tax since we're born
M'luds won't you help me with Welfare Reform?
M'luds won't you help me, to make people see?
The wall built around us by distant MPs?
We're tryin to help them, but will they help me
M'luds won't you help me to make people see?
M'luds won't you help me to keep people safe?
To live home and free with means to escape
The four walls that bind them
May keep them in chains.
M'luds won't you help me to keep people safe?
M'luds would you see them pushed onto the streets?
No hope of redemption, No way to compete?
No more hope of working
With nothing to eat.
M'luds would you see them pushed onto the streets?
M'luds are we worthy of all you hold dear?
Free speech, human rights and a voice you can hear?
The sick and the poor Lords,
Are living in fear.
M'luds are we worthy, of all you hold dear?
Written, sung and produced by Sue Marsh, diaryofabenefitscrounger.blogspot.com
I met a man who met a man who met a man who said,
“My work-shy next-door neighbour is a-swinging of the lead,
He says that he’s disabled but I know that limp’s a fake,
He’s not really sick, he’s just a shirker on the take.”
...read the full poem here and share any additional verses you feel inspired to give, or perhaps someone would like to set it to music?
Update: Doug Shaw has done this great country version of "I met a man"
