Let’s be clear – Tory and Lib Dem MPs have decided terminally ill patients should work or starve

Claire:

Here is more evidence of the callousness and inhumanity of the war on Social Security entitlement. Please sign WOW petitition (don’t forget to validate your signature via email!)

Originally posted on Pride's Purge:

(not satire – it’s ConDemNation today)

Back in 2011, Conservative and Liberal Democrat MPs joined together to reject an amendment which would have exempted terminally ill cancer patients from benefit cuts.

They decided that if you are diagnosed with a terminal illness such as cancer – but have been given more than 6 months to live – you will have to work or starve.

Here’s a previous blogpost about that:

The government has finally done something so outrageous even I can’t be bothered to satirise it

This decision by coalition MPs was so outrageous that after intense lobbying, there were some concessions made by the government.

However, in a bizarre piece of upside-down DWP logic, it now seems that if you have less than 6 months to live – you will be refused benefits.

This is from the Chester and Ellesmere Port Foodbank blog:

Jenny

Jenny came to the…

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Pat’s Petition- make a difference in support of people who are chronically sick and disabled.

Chronic sickness and disability will affect all of us at some point, whether we become unwell or disabled, or whether our parents, children, friends, colleagues or neighbours do.

Please, please sign Pat’s Petition.

http://epetitions.direct.gov.uk/petitions/20968

Today is the last day to collect signatures needed to ensure the debate about welfare reform includes the terrified voices of those most affected by it- the chronically sick and disabled. Pat’s Petition calls for Welfare Reform to be conducted in a responsible way so that disabled people and people with chronic illness have the cumulative effects of welfare Reform and Government Cuts taken into account.

Today is the final push- we need more signatures. Please, please help. We’re not furry*, or cute*, but we need your support.

Cute and furry badgers get your support. How about us?

*some of us are in fact furry and/or cute.

Claire:

I’m re-posting this striking report of what appears to be police harrassment and intimidation of a vulnerable disabled person in their own home in the middle of the night . I am appalled to think that this is how police forces plan to dea with disabled people advocating peaceful protest on their social networking sites- which is not illegal in any way!

Originally posted on Pride's Purge:

(Not satire – I’m sorry to say)

UPDATE 2 – have a look at this link for the latest on the disability activist who was questioned by two police officers in her home at midnight in relation to comments she’d posted on Facebook critical of government cuts and specifically the Department of Work and Pensions and their attacks on the rights of disability claimants:

PCS trade union sets police on disabled activist for campaigning against the government

Here’s the original article on Pride’s Purge:

Police raid activist’s home for ‘criminal’ posts on Facebook.

UPDATE 1 - She has made a formal complaint to South Wales police and in the letter, she lays out in detail what happened that night.

She has given me permission to share it with you, so here it is, in her own words:

Complaint Against South Wales Police – Harassment and Intimidation of a Vulnerable Disabled Person

 Subject Access…

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Quantifying kindness in #Leeds

It couldn’t last, could it? Thant wonderful feeling I shared with so many on my Twitterstream last night as we were inspired by the Paralympics Opening Ceremony. A feeling that we can be more than we are, that we can be proud to stand up and shout that we want rights, not charity, that we can reach for the stars rather than look down at our feet. That we are Spasticus Autisticus, and we are proud.

I came down to earth with a bump today. I’m traveling to London to attend the Social Innovation Camp today, where I’m lucky enough to have been asked to come and speak as a panelist.

For people with disabilities, travel is difficult. Access is patchy, at best, and a small thing can throw travel arrangements into disarray.

My taxi came to pick me up from my home and bring me to the railway station. The taxi driver was going to be trouble, I could tell. First words out of his mouth were

“You want me to put that in the car? This isn’t a disabled taxi” (he was talking about my mobility scooter. It separates into parts and fits comfortably in even small boots.

I thought ‘no, I want you to tow it to the station’ (I think in sarcastic, sometimes) but I said “yes please, I’ll separate it and if you could please put the parts in the boot.”

He grumbled, but he did it, and we set off. The next thing he said was:

“Why don’t you drive that scooter to the railway station? Look, it’s easy, you can go on all these footpaths, no problem.”

I didn’t reply. The dropped kerbs on my route to town are irregular, and I have found myself scooting on the inner ring road before because I wasn’t able to get back up onto the footpath. Besides, my scooter doesn’t go very far without another charge, and I need to reserve my charge for my travel across London at the other end of the journey. Besides, dammit, why should I have to explain myself to the taxi driver? And why would he be so keen to not have the business, anyway? Rights, not charity, I thought to myself, and neglected to answer. I chose to ask him about the roads today instead.

“Big accident in town. Traffic backed up” he replied.

Great. I’m going to miss the train if I don’t get there in time. Quite apart from the requirement that I should be at any station from which I want to travel at least 20 minutes before the time of departure, and even then there’s no guarantee that the ramps will be in place. Sometimes, trains have just left me on the platform when I have been trying to get on. (Yes, I’m looking at you, Sheffield.)

I amused myself by noticing during the journey that a man was stood next to a completely impassable pavement, where work on the pipes beneath the surface meant there was no alternative for people but to walk on the road. Of course, there was no dropped kerb in sight. I wondered if he was from the Council and was going to address the issue with the service company. I found it funny in the context of being told by the taxi driver how accessible it was.

Sure enough, some kind of problem with the traffic flow meant we had to take a big detour, and I mentioned to the taxi driver that I was anxious about catching my train. He did his best to get me there, and miracles of miracles, we arrived with time to spare.

“How much do I owe you?” I asked. I could see the fare was £5.50. “And can I have a receipt, please? Would you make it up for £6, to include a tip, please?”

“Sorry love, the fare is £7.50. I charge extra for the scooter.”

“No, the fare is £5.50. I’m offering a tip to bring it up to £6. I’m not paying you £7.50 when the meter clearly says the fare is £5.50”

“Bloody Disabled” he said.

I was shocked.

“Today, I won’t charge the extra. But I won’t take you again. You should always go in a disabled taxi.”

“But I don’t need a disabled taxi. My scooter fits in your boot. What’s the difference if I have suitcases or if I have a scooter? Do you charge extra to transport suitcases?”

He got out of the car, and got the bits of the scooter out of the boot. He got back into the car to watch me put the pieces together. It’s not easy for me to do this, and it takes quite a bit of time, and makes me quite shaky and in more pain than I need to be.

I’m afraid I couldn’t resist saying “I hope you and the people you love never become disabled and have to cope with this sort of thing. Did you hear about that case in Bradford where the taxis have got into trouble for charging extra to people that are disabled?”

He said nothing.

I scooted to the platform. I missed the train by two minutes.

I was brimming with tears, the “Bloody Disabled” comment was ringing in my ears. This is how they think of me, those people who previously were so kind.

I always use the same taxi company. I’ve used them for ten years, exclusively. Most of the drivers have been kind to me, particularly when I was heavily pregnant and working and getting a taxi home a lot after being exhausted working on the wards. Clear as day, I remember the day I got the phone call that my Grandad had died. I left work, and cried all the way home in the taxi. The cabbie refused to take any money from me. I don’t forget that kindness easily.

My question is, how many times do I experience something like this before I change my cab firm allegiance, and they lose my (quite substantial) business?

p.s. Train station staff were great and I’m on the next train.

#Flying as a #Disabled #Parent- shocking service at #ThomasCook

You’d think by now, I’d be used to it.

It’s now 21/2 years since I finally gave in and became a wheelchair user. So in that 21/2 years I’ve learned more than anyone should ever need to about public transport, about the jobsworth and the kindly strangers one finds at bus and train stations up and down the land. I’ve even braved the idea of Independant air travel, although only an internal flight to Scotland.

I’ve heard every excuse; the extra licences required by scooters to prove their various dimensions, safety provisions, gradient of travel restrictions etc. I’ve heard the nonsense about needing to have booked all access arrangements in the dawn before time in order to do an ordinary commute. I’ve faced sheer incredulous disbelief at the idea that I neither require nor desire to have assistance or an escort for every trip I take (even though I have no funding for such assistance).

I’ve also been initiated into the mysteries of disability on the rail network, the kindly old timer who disclosed to me how I should be getting a third off any full price rail tickets if I stayed in my wheelchair on the train. I’ve experienced the kindness of a fellow wheelchair user, who moved to the alternative disabled space so that I could board the train, when the staff were being less than helpful.

Today was always going to be difficult. Today, my plan was to travel with my two kids to Lanzarote, where my extended family are meeting in order to have some time together and hopefully some sunshine. Booking the tickets wasn’t very easy. Everyone else decided to fly with Ryanair, and they all booked tickets front heir nearest airports, namely East Midlands and Stanstead. When it became time for me to book my ticket, however, I kept getting stuck in a “computer says no” loop. I phoned the Ryanair customer service line, and they explained that the issue was that they were not set up to deal with a disabled adult travelling with minors, particularly an infant. I argued strongly  that these were my children, we were going on a family holiday, and I didn’t see why I couldn’t bl**dy well fly with my children like anyone else. Oh as usual, it was due to ‘elf and safety. Apparently, it didn’t even count if I flew with other members of my family (to help look after the kids), unless I actually bought them a ticket with my own.

So, I had to re-think the plan. I eventually found out that if I paid a whole lot more, so that I wasn’t flying with a low-cost airline, there were slightly different rules (and a bigger luggage allowance), so I decided to book with Thomas Cook. This meant I had to travel on different days to the rest of the family, and cut the holiday short from 14 days to 9. But it made it possible, so I went for it.

Before paying for the tickets (a whopping £850.00) I decided to do some market research, this is no small purchase and the possibility of it going wrong is quite terrible. So, I called the number listed on the website for assistance, and had a lovely conversation with the fella on the other end of the phone, who seemed to really understand my situation. I told him about the issue with Rynair, and he assured me that Thomas Cook just wasn’t like that, that there was no issue with me travelling with an oinfant and an under 16. I checked and double checked, yes, the booked assistance was now live and so there would be assistance for me at the airport. Yes, the kids would be sitting with me in the medical seats, one seat for a child and an infant on my knee. Yes, they were aware I would be travelling independently with the kids. This would be NO PROBLEM AT ALL.

Of course, I should have known better. I should have got a contract immediately drawn up to that effect, preferably using the blood of our respective firstborns. I certainly should have had duplicate and triplicate print outs of the written record of the conversation. But you know, I just thought it would work out? I just thought, as I hovered over the online “pay now” button, and checked with the passenger assistance advisor, who assured me the whole thing was now settled, I just thought it would work out, for once.

Yes, dear reader, I was spectacularly wrong. Again.

First sign all was not going according to plan was when upon arrival at the airport in Manchester, I went to the passenger assistance check in to be told “we don’t do kids, sorry”. I immediately countered with the usual stuff, this is normal, every day social barrier stuff that I have to go through. They insisted they could not offer me assistance, although backed off from the spectacularly discriminatory way they approached the situation. They went and talked to their boss, then returned, and took us all over to the check in desk.

This is where it began to get really surreal. The woman behind the check in desk didn’t know how to handle me at all. In fact, she didn’t even address me before calling for her supervisor. I watched the line of people checking  in, whilst bribing my children with crisps and apple juice, and being thankful for an endless stream of buses visible through the window (there’s nothing more interesting to my toddler than a “Big Bus”) so they were amused… At least for a while.

The supervisor came to explain very sweetly that unfortunately, the assistance company couldn’t offer me assistance, as I was travelling with children Independantly. She was very sorry to say that because of this, there was no way I could. Catch the flight.

What? Are you telling me that my tickets to flare invalid because I have children? Even though I’ve bought tickets for those children?

I’m afraid I was a little incredulous. How on earth do you justify this? I bought these tickets in good faith, in fact, I was on the phone to your assistance line when I bought them. I’m hardly likely to spend this kind of money without checking I can, in fact, fly with my kids.

Do you have a written record of the conversation? Did they give you an assistance booking number?

No, but when I spoke to them as I was buying the tickets online they assured me it was all sorted?

Do you have any proof of that?

No.

No, I somehow assumed that by calling the assistance line and checking whilst buying the tickets that I’d fulfilled my side of the bargain. I must have forgotten the inevitable rule that disabled people need to be double and triple more organised, and get written proof of every assistance conversation they have. More fool me. They claimed to have no record of the conversation, no assistance booked, no medical seats available, and that I would have to just go home. Even though I’d been dropped off at the airport with all the luggage and had no way of getting the kids and myself home without help.

You can imagine how the conversation went.

Essentially, they were worried about who would have responsibility for the children during the transport to the plane and during the flight. I countered that I was the responsible adult, and as their mother it was entirely appropriate for me to travel with my children. They emphasised that their regard for health and safety meant that the company that was out-sourced to do the passenger assistance was not prepared to offer assistance to me and my kids. And the decision about whether they would be allowed on the plane under my supervision would be one only the pilot of the plane could make, as it was highly irregular.

We argued back and forth for a couple of hours. If you’re a spoonie, you will understand that this kind of thing drains ones resources and makes travelling so much more difficult. We just don’t have energy to waste on disagreements, and yet in order to have the same rights as everyone else, we have to have these discussions whenever we do anything.

I eventually got them to concede that if I agreed to have no passenger assistance, the objectilons of the passenger assistance company were no longer relevant. And that I would await the decision of the pilot about whether or not I could fly.

So, I was left in the airport with both kids and all our hand luggage to navigate our own way across the airport to the lounge where everyone was waiting. Luckily, the flight was delayed for several hours, so despite spending about 21/2 hours at check in we still had time to have a snack and a drink and all go to the toilet before boarding.

Ultimately, the pilot agreed to transport us and the kids were perfectly well behaved (as they always are). And the toddler who caused so much concern to the not-yet-disabled crew who were alarmed that she travels sitting on my knee in the scooter? She sat on my knee, or toddled next to me holding hands. As she always does. Because this is the only way she has gone anywhere with her Mum, since she was a tiny baby. Because that’s what you do when someone in your family has a disability, you adapt and move on, or you give up.

I know that lots of you who read this blog are not-yet-disabled, and may be alarmed to think this was my experience, but this is not going to be any surprise to any of the readers who are disabled. It’s what we face every time we go out. Please bear this in mind as the Government begins another onslaught against our rights when they start to remove mobility support in DLA during the migration to PIP- they will claim that our country is fully accessible now. My experiences and those of so many others can show you how far from the truth that is.

 

P.S. I have some photos I wanted to share in this post- but I’m still battling exhaustion so for today, you’ll just have to take my word for it.

Martin’s post #DAYtoDAY challenge blog

Martyn Weller, chair of Disability Action Yorkshire, tackled a  24 hour journey on a mobility scooter on June 30 and July 1 to highlight the everyday challenges facing people with disabilities.

He travelled the 125 miles from Disability Action Yorkshire’s (DAY) Harrogate headquarters to the charity’s new, specially adapted holiday lodge in Kenwick Park Estate, Louth, Lincolnshire.  He raised £700 that will go towards the £50,000 cost of adapting the lodge to meet the needs of disabled people.

125 miles on a mobility scooter in just 15 hours

Well I did it  - 125 miles in under 24hours by mobility scooter!  In fact it took just 15 hours, largely due to Bessie not missing a beat, only 3 battery changes, and the superb backup from the Mobility Partnership, who followed a few yards behind the whole way – not to mention our own special branch of the Harley owners’ club.

We made it to Hull on the first day, and after an enjoyable overnight stop, we made good time the following day, in spite of a slight detour around a few housing estates in Barton on Humber, we got to Louth at the appointed 3pm. Me lost? Never had I just wanted to study a few bedding plant displays.

The first day was marred a bit by the awful weather which hit Saturday afternoon. A three hour stretch in open countryside with the driving rain lashing across the road as our hero bravely battled on defying all nature could throw at him. Well ok it wasn’t quite that bad but you know what it is like when you get wet and it’s running down the back of your neck and there is nothing you can do.

There were a few highlights to the trip, mainly milestones we could tick off. The first glimpse of the Humber Bridge, and the realisation that this was achievable.  We were still two hours from the bridge but well ahead of schedule.  Next day, of course,  actually crossing the bridge itself – a great but rather breezy experience; next passing the welcome to Lincolnshire sign; similarly the welcome to Louth sign and naturally arriving at the holiday home, to be greeted by the thronging crowd and a well deserved (well I think so anyway) glass of wine. Actually the word crowd doesn’t do justice to what must have been more than 10 people.

The other outstanding part of the trip was the reaction of so many people along the way who despite being held up still honked their support and waved. Only two showed their disapproval with various gestures and a few words mum told me to never use. I can only think it was a reaction to not knowing who their fathers were.  At least the curious spectator who asked what it was all about and then donated a fiver restored my faith.

So what was the trip like? Well as you trundle through the countryside you do notice things you take for granted when whizzing along in the car, the stunning beauty of the countryside we live in, the bird song, the numerous odours, the well kept villages each garden a credit to its owner, people stopping to chat, a dog bounding up to the gate anxious to see the world go by, the poor condition of the roads and the sheer amount of road kill. There were a few heart stopping moments on some roundabouts and the bits of dual carriageway I was forced to use, but overall I am sure I had the easy bit.

Thank you everyone who has supported this mad cap idea, I suppose you are all thinking what next? Well watch this space………..

I’m so impressd by Martin’s remarkable achievement- and I’ grateful that thanks to his determination, the holiday cottage is one step closer to providing affordable holiday accommodation for disabled people and their families. This is what the holiday cottage looks like:

The cottage in the woods

The bedroom

Sheffield #Access #Fail by @Northernrailorg

Being a disabled traveller

I don’t often blog about the minutae of attempting to be a working person who uses various mobility aids in order to participate in society, but the response to a number of Tweets I sent out yesterday when I found myself in a labarynthine mess stuck between policy and prejudice that I regularly encounter in the public sphere. So here’s a snapshot of what it’s like for me to attend a meeting.

Going to visit Patient Opinion in Sheffield

I had arranged to go to the @PatientOpinion offices to catch up. I’m a big PO supporter, but haven’t previously been to the office. It’s only 35 miles from my door, so how hard can it be to go there for a meeting?

Problems encountered every time I travel

Firstly, I can’t lift the pieces of my scooter into the boot of my car. this means that to all intents and purposes, it’s useless to me. I have to go everywhere in taxis and on trains. I could use some buses, but the attitude of various drivers and the physical difficulty of getting into the approved space means that this option isn’t used at the start of a long day because it’s so exhausting.

So, I use my electric scooter to get from my house to the road. I can’t get down the hill outside my house without it. I used to rely on my manual wheelchair, but this wasn’t safe to self-propel down, and impossible to self-propel up. So I had to get a (fit and strong) person to do the pushing me up and down the hill. Which meant I couldn’t go out independently, for instance to work.

So, now I have the electric scooter. I use it in an “off-label” way to get up and down a hill that is far steeper than my OT head assesses as safe to use an electric scooter on, but I have limited options. The battery is being burned out fast, but it still keeps going, helping me to participate. I’ll cross that bridge when I come to it.

First class is more comfortable for disabled people

So, I ordered train tickets for collection. I can’t comfortably travel in standard, so I often buy first class tickets if I can afford it. There is a critical few extra inches of turning circle in First that means its less painful to travel in a wheelchair or scooter. I see this as a good use of my DLA. So, instead of a £17 ticket, to Sheffield, mine is a £35 ticket (return). To be honest, I’ve had that many experiences of the system cocking up that where there is an option to be more comfortable, I’ll take the hit.

Leeds station

As I arrive at the platform to depart in Leeds, there’s clearly panic from the guy at the station, who informs me

“you can’t get on the train- you haven’t booked special assistance”.

“Don’t be so ridiculous. I don’t need any assistance except the ramp to alight the train, and I can drive unassisted up it. Please just put the ramp down and we’ll say no more about it. Please let the Sheffield staff know I’m on my way.”

(Only here I am blogging about it. Tsk).

Sheffield first #access #fail

I got to Sheffield (after a lovely Bacon Roll and cup of tea- thanks Cross Country Trains!) and unfortunately despite checking with both the guy on the platform at Leeds and with the conductor on the train, there was no-one there to provide the ramp that I need to disembark the train. Madly waving at passers-by and frankly anyone in the area, I attempted to make them aware of my plight. This is always really panicky, the sense that if one isn’t noticed, one will be soon headed off far away (in this case, to Plymouth).

The conductor on the train had come to check I had disembarked safely, and was as annoyed as I was to see I was still waiting on the train, hanging out of the carriage and waving like a woman possessed in the vain hope that someone would offer assistance. He offered to use the ramp within the train to get me off it before he was due to leave, rather than wait for the station staff. So that’s what we did. Problem solved. He did tell me he had phoned the station staff to tell them I was coing, but then so had the ridiculous man at Leeds station, and I didn’t know if either of them were being honest.

Visit to Patient Opinion

I was met by the lovely Dr James Munro of Patient Opinion at the station, and we spent a couple of hours chatting with the team. It was lovely. Sadly, it was soon time to go home. I was dropped back at the station by Dr James Munro, who wasn’t able to stay in the drop-off zone for long.

Sheffield second #access #fail

I went into the station, and went to the platform the train was leaving from. Phew, 15 minutes to spare. So, knowing how often this is the critical time to make sure arrangements are properly made I looked out for station staff and train staff. Sure enough, several staff were floating around, so I made sure that I politely informed each of the that I was expecting to travel on the next rain to Leeds, that I would need the ramp, and that here I am, sitting next to the ramp ready for someone to attach it to the train so i can alight.

Each person I spoke to insisted it wasn’t their job to attach the ramp to the train, but not to worry, because

“someone will be along in a minute”.

Now, I’ve relied on “someone” before, and let me tell you, they’re not very reliable. In fact, “anyone” could have attached the ramp to the train. It doesn’t require much training.

The train arrives, and I nervously drove the scooter in between the ramp and the train, all the time telling all the staff I could see that I needed someone to attch the ramp. Everyone was sure that “someone” would be along to do it. I felt that the time was approaching for the train to leave, and was on my phone. I could see the conductor and train staff get onto the train and close all the doors. Then, the train pulled away.

Sure enough, “someone” had failed to materialise and I had missed my train.

So, I went back to the information desk to talk to the staff about how this had happened, and what to do next. I showed them my First Class anytime return to Leeds. They were apologetic, but said that there was nothing they could do. I told them about the morning experience, too, but they said that the fault was with both Leeds station (who hadn’t phoned in) and the conductor on the train (who hadn’t phoned in). Complaint form number 1.

They advised me of the next train to Leeds, which was run by Northern Rail.

Sheffield third #access #fail

I dutifully went to the platform (this time with a member of customer service) only to find myself confronted by the train conductor.

“Sorry, I can’t carry you in the scooter. Company policy” he said.

“Really? I said, ” this sounds discriminatory? surely this isn’t your company policy?”

“No, we don’t *BAN* scooters. But we only carry folding ones.”

“Oh. I see. well, luckily my scooter breaks down into seperate pieces and fits in any car boot. So you’ll be able to take me?”

“Only if you can carry all the bits of the scooter onto the train and put them in the luggage rack yourselves”

“Really? so if I had a heavy suitcase you would offer me assistance, but you’re directly telling me you refuse to carry any bits of my scooter onto your train?”

“Yes”

So, we carried on with this pleasant conversation. I was becoming less pleased with the service from Sheffield and Northern Rail by the second. But there was no shifting this man, who was convinced that his company policy overrode any national or international law and obligation to people with mobility issues, quite apart from having a human response and just helping a traveller out.

Fuming, I went to the platform supervisors office. Having already filled out a complaint about the train that had left without me despite seeing me waiting for assistance, Ithought I would fill out another form for this experience. The supervisor was apologetic, but helpfully printed off a policy document from Northern Rail stating that they did not agree to transport scooters, unless the mobility impaired person carried them onto the train themselves. So the conductor had been correct in interpreting company policy, it was actually an official policy to directly discriminate against people with disabilities and mobility isues.

I was informed of the next train, and started to wait. I had some time to kill, so I thought I would also complain about the morning when no-one had arried to help me off the train. Having completed a hat-trick of complaints I felt it was time my luck should turn.

Sheffield fourth #access #fail

The train to Leeds arrived, thankfully a Cross Country service, and so I started up the train to board. The platform supervisor had the ramp set up into Standard. I asked him if he would mind moving the ramp as I had a First Class ticket and wanted therefore to travel in First Class.

“No, can’t do it love. There isn’t time”

“Yes there is. It will only take a minute- the train isn’t very long. I’m not paying for a First Class ticket and travelling in Standard. Would you ask a non-disabled traveller to do so?”

“You never showed me your First Class ticket. How am I supposed to know you wanted the ramp into First Class?”

*turns to customer service person* “Hang on, I showed you my ticket about an hour ago, did you not see that it was a First Class ticket?”

“Well, you cant go in first anyway. There’s already someone in the disabled spot”

“Is there? that’s unusual. Well, if thats true, well have to work something out. Let’s go and see.”

So we went down the train. the platform supervisor joined me, swearing and muttering all the way down the train in a most unfriendly manner. He obviously didn’t see the reason why I should not want to accept his kind offer of help into Standard and insist on travelling in First.

We got the ramp up, and I drove on to the train. Suprise, suprise, there wasnt anyone in the disabled spot. There was a whole family’s luggage in the disabled spot. The family memebrs startted to remove the luggage with guilty faces, avoiding eye contact with me, and placed it all in the luggage spot. I’m familiar with this from the people who guiltily come back to cars parked in disabled bays without Blue Badges. Only “popping in” to the shops and they get away with it. I dont know if they had refused to move the luggage and therefore the train operator had to offer me a standard space, or if they had simply not been asked to move the luggage despite the clear signage that the space was protected for people with disabilities by law. But, they were only “popping their luggage there” it’s not like it was going to impact on a disabled person, now is it? They were not reprimanded, or fined, or saw any consequence to their actions. No wonder the guilty faces.

So, for people wondering why you dont see so many people using wheelchairs and scooters in your local train station, in your workplace, in your church or social club, down the pub, out in town, taking their kids to ballet lessons, or cheering on their kids at football, how about reflecting on this journey and think about why that might be.

And also have a think about the planned reform of DLA and replacement with PIP. Large numbers of people who have mobility needs will not be assessed as needing any help on the basis that our country is now proudly accessible to all.

I can’t think of a better word to describe this than sick.

Guest Post by Martin Weller of @2012DaytoDay

Guest blog by Martin Weller of @2012DaytoDay

Martyn Weller, chair of Disability Action Yorkshire, is tackling a 24 hour journey on a mobility scooter on June 30 and July 1 to highlight the everyday challenges facing people with disabilities.

He will be travelling 125 miles from Disability Action Yorkshire’s (DAY) Harrogate headquarters to the charity’s new, specially adapted holiday lodge in Kenwick Park Estate, Louth, Lincolnshire.

Using my disability journey to make a difference

I was born with spina bifida and my twin sister wasn’t.  Luckily I was born to parents who believed it wasn’t going to make any difference. We did virtually the same things (well I didn’t actually fancy ballet lessons so didn’t do that) and so throughout my childhood, apart from the operations, physio, trips to hospital and special shoes I really ignored having a disability. Of course going to main stream school and being the only disabled kid had its moments, but at least I had a better way of getting out of cross country than trying to forge a note from my mum.

As I grew up and got a job I think I actually turned from ignoring my disability to going out of my way to prove it didn’t make a difference.  I suppose looking back it was a form of denial. Turning up for a business meeting someone once said should he carry my case for me. He said, “We have a lift for people like you.” I don’t know how he knew about my Julia Roberts in a lift fantasy but I accepted!  Bit disappointing really – all it did was go up to the next floor.

Part of the denial was a reluctance to accept help, whether from someone or something – I would sooner struggle than use a disability scooter. It was only during a family trip to Florida and trying to tramp around Disneyland that I realised this was stupid – you go to the front of the queue at Disney if you are disabled!

So why when I am old enough and wise enough to know better do I come up with a mad cap scheme to ride 125 miles in 24 hours on a scooter? It is I suppose almost back to denial – other people raise money and awareness for charity why not me?

Nowadays everyone rides a bike from Lands End to John O’Groats blindfold, whilst playing the bagpipes and cooking pasta on a portable gas ring. I like to think my challenge is a bit different to those that have gone before; hopefully it raises a pound or two, whilst raising the profile of our organisation. It also publicises the fact it would be an almost impossible trip to make for a disabled person using public transport.

As the day looms I can’t help thinking maybe all those years ago I should have just done the ballet.

I’m wishing Martin every success for his Journey- I know how gruelling it is to travel anywhere as a person with a disability, and how badly served by public transport we are. He’s raising money for a great cause, so please do sponsor him if you can.

Martin Weller, @2012DaytoDay Challenge

I am a wheelchair user. I haven’t always used a wheelchair, but since April 2010, it has been the best way for me to get around outside, minimising pain and fatigue.

Becoming a wheelchair user is a process, rather like any loss process or a bereavement. One experiences different emotions; from grief and anger, to despair and acceptance. But it’s not a linear process; we might be fine for a while then plunge back through another layer of anger and despair when we realise another plan has to be changed, another holiday cancelled.

It’s not easy for the family of people using wheelchairs, either, because they have to deal with the process the wheelchair user is going through, whilst also following their own loss process. My children have had to adapt to the physical limitations I now have. I can’t pick them up very easily, and I can’t sit with them on my knee for a cuddle as I used to. I’m not able to do the school run.

My partner has had to adapt to becoming a carer, and to being charged with doing a far greater share of helping at home to compensate for my limitations.

Making a decision to plan for the future in a wheelchair is hard emotionally, but it can be hard practically, too. It is often not possible to stay in one’s job, if they cannot make “reasonable adjustments” and this can have a serious impact on the family’s finances (I’m speaking from bitter experience, here!) People are often unaware of how little equipment and adaptations are actually available on the NHS, and how much have to be funded out of the family’s resources.  Lots of activities, favorite holiday venues or meetings with friends have to be changed or cancelled because the venues have poor access.

Recently, I bought a second hand mobility scooter, because self-propelling a wheelchair takes considerable energy, and my energy stocks are very limited.

Despite my initial concern about how it would look to others, this addition to my life has been transformational. Thanks to the scooter, I can now independantly get up and down the hill outside my house, without the need for a push from a strong person! I can now imagine going with my family on a holiday, and being relatively independent to get from place to place without a push.

We still face the problem of a lack of accessible, affordable holiday accommodation. Common to many families with a disabled member, finding a place that we can afford, that I can access, so that our kids can have a summer holiday like any other kids is very difficult.

During the @2012DaytoDay Challenge, Martin Weller, the CEO of a local Charity called Disability Action Yorkshire is hoping to raise funds towards the provision of accessible holiday accommodation for people who use wheelchairs- this kind of accommodation is in very short supply.

Martin will be using his scooter to get from DAY HQ, Harrogate, to DAY Holiday Cottage, Louth between 30th June to 1st July, 2012. This is a journey of 125 miles and he has just 48 hours to complete the challenge!

He’s fundraising for families like mine to have holidays in accessible accommodation that doesn’t cost the earth. Please support him if you can, and follow his progress on Twitter!

For more information about Disability Action Yorkshire, please see http://www.disabilityactionyorkshire.org.uk/ or follow them on Twitter @DisActYorks, or on Facebook at www.facebook.com/disabilityactionyorkshire

Follow Martin on Twitter, at @2012DaytoDay. Donate to help Martin reach his £10000 target at http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=DAYtoDAYChallenge

All Quiet on the Spartacus Front | Ramblings of a Fibro Fogged Mind

http://ramblingsofafibrofoggedmind.wordpress.com/2012/05/28/all-quiet-on-the-spartacus-front/

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