Feeling the Fear

L.S. Lowry The Cripples

I have tried to keep away from the political as much as possible. Of course I know politics is everybody's business and I know only too well how much it affects my life, but in the run-up to a General Election I pick and choose where I receive my information. I am happy to read manifestos, read newspapers and check out blogs but that's where I draw the line. I hate the petty and pathetic arguing of PMQs and all the braying, name-calling and school-yard taunting of the House of Commons. I won't watch the TV debates because they always degenerate into nit-picking rows about issues that mean nothing to me. Is it only me, or are none of the parties being specific about or standing up for the disabled people of this country?

I notice that in the last couple of days the Labour Party have produced a disability manifesto, probably due to questions like mine being asked as they travel round the country. It does address some issues, but not the most important question of whether our income will remain the same. Living on a fixed income is difficult enough but with Conservative Party plans to roll out Universal Credit despite knowing that it will hit disabled couples hard - in some cases to the tune of a £300 loss - as they lose their premium for caring for each other. We already know about and can feel the differences of ESA and PIP, especially those sneaky little changes such as lowering the distance you can walk before benefit kicks in, and removing the word pain from the mobility section - I have been told that as long as I can walk the distance specified that means I lose benefit, whether I walk that distance in agonising pain or not. I am also aware that the cuts mean there are less CAB staff and voluntary sector workers to help disabled people with complicated forms meaning those less informed are more likely to lose benefit.

The news last week that Tory think tanks were considering such measures as removing Carer's Allowance and Contribution Based ESA were terrifying for some. In my usual post at the centre for MS in my local city members were downcast and frightened. A group sat around discussing what these measures would mean for them. Certainly for me, losing my contribution based ESA would mean losing income of £400+ per month - these are not small figures. Taking away someone's right to claim carer's allowance for me means I would have to pay someone from my PIP to clean my house and help with care. So what would I use to pay my bills? Others were concerned about the carer's allowance they currently claim to look after their spouse - many in Lincolnshire have been hit unfairly by the council's application of Bedroom Tax legislation where if you sleep in separate rooms because of your disability you will still be charged for the second bedroom. Of course you can fill in a six page form to apply for their discretionary fund but this fund is based on income - you have to show not only income but the breakdown of your household expenditure so that some official can decide how you should be spending your money. I know couples who had their application to the discretionary fund turned down because they 'earned too much'. My understanding of the bedroom tax was that it was applied to those people with more room than they needed, not for those who need the extra room and have extra benefit due to a disability. Not even showing officials around your living space works to prove you have no extra room, because according to our council it is not about room it is about money and they are counting DLA/PIP as extra income.

I am scared about my future now. I know I will never be able to work full time and I know I will always have MS. I imagine a future of having no disposable income with which to enjoy my life. It is a feeling of being slowly pushed back indoors where we 'ought to be'. I have always been very creative with my cash, making sure I save for future trips like my recent one to Venice. Part of my recovery after relapsing has always been having something to look forward to. If these cuts proceed as planned then there will be nothing to look forward to. I love seeing other people with disabilities around, enjoying life and becoming part of society. This government has made sure we are not part of society by looking down on us, insulting us, making others suspicious and even jealous of us. A friend asked for help carrying his groceries out to the car at a local supermarket. He is a paraplegic with a high level injury so is a permanent wheelchair user. The shop assistant popped the box in the boot and then commented on the car 'this isn't bad is it?' and 'I can't afford a car like this'. There is this misinformation, perpetuated by tabloids like the Daily Mail that disabled people are 'given' brand new cars. People don't seem to realise that is paid for by all those luxurious benefits we get. Whereas previously disabled people could still buy a home or get a loan to afford a holiday now they are being turned down because benefits are no longer seen as a 'safe' income. The inference is that we should know our place and be seen to have a more fitting lifestyle of poverty. The argument that benefits caused the deficit is clearly spurious to anyone with a hint of a brain. Pensions take up the greatest section of the benefits bill with ESA and DLA only a small proportion. This is not really to do with income it is to do with stigma.

I was having lunch with my ex in-laws when one of them pointed out a disabled man eating with his family. He was using an electric wheelchair and needed to be fed by his wife/carer and my mother-in-law seemed very shocked by this -'what is he doing out?' she asked. Luckily I didn't hear about this in full till after the event because thankfully I was at the other end of the table. This man was not much different to my previous husband before he died, and we used to travel about all over the place. I couldn't believe the old-fashioned idea that disabled people shouldn't be part of mainstream society was still alive and well. This is the attitude I feel is creeping back into society. It is the idea that disability is so repulsive, so 'other' that a barrier needs to be between us and the 'normals'. The buffer zone was once the institution where within living memory people who were unacceptable were kept separate. The welfare system slowly changed all that. Disabled people were allowed to be visible, to be part of their communities and with the rest of society. I feel a reversal of this attitude and now it would seem to unacceptable to reintroduce institutions there has to be a different buffer zone - the buffer zone of poverty.

As much as I am desperate for election day to be over I am also very scared about what the future holds for disabled people beyond it. In my role as counsellor for people with multiple sclerosis I can already see how the changes are affecting the mental health of the people I see. The people who make these speeches, decisions and changes don't have to see the fall out of their policies, but I do. I can only hope for a more understanding and compassionate government who, at the very least, stop the rhetoric of hate. I saw that someone had finally reported Katie Hopkins for incitement to racial hatred, but who do I report for incitement to hate disabled people?

Venice

My first glimpse of the romance of Venice

My mum has always wanted to go to Venice. It has been a dream of hers for most of her life, and after the gift of some money we decided to go together. This was a huge trip for Mum because it was her first time abroad since she emigrated to Australia and then came back again at the age of 12. It was also my first time in Europe so a first for both of us. In order to make life easy for the trip we had booked airport assistance for me - this involves being taken through the airport in a wheelchair and having help through security and being first on the plane. This helps enormously because I find the long queues exhausting and painful, sometimes standing is worse than walking so queueing is my worst nightmare.

in Cannaregio

We were lucky to be able to afford a week's trip, but really this is necessity rather than indulgence. Flights wipe me out. I only had NYC to compare it to so I wasn't expecting to be as tired after a two hour flight, but still my legs and feet swell enormously, my joints ache and I lose some function. We arrived at 9pm and made the choice to spend money on a water taxi rather than struggle on and off a bus or ferry. This sped up the journey across the lagoon and gave me space to stretch my legs, also we would get the view as we approached the city. In reality, arriving was slightly eerie as we passed by dark and deserted islands which turned out to be Murano and the Greek Orthodox cemetery. It was misty, and sea spray splashed against the windows of the cabin so all we could make out were dim lights through the gloom. Then we saw buildings, ducked under a bridge and we were there; a tiny canal with tall buildings either side, atmospheric lighting and not a person in sight. We passed under tiny bridges, across the back of a hospital with an ambulance boat parked outside then our driver began to reverse into and even smaller canal until we could see a tiny lit up garden in a little courtyard. We disembarked at our hotel and were glad to make our way to straight to bed.

We were given a disabled room which I was happy to see had a bath with shower over it, plus a walk-in shower at the opposite corner. There was a little seat attached to the wall, that had a plastic seat with two handles. I found out part way through my shower that the seat with handles was just placed on top of the drop down seat and was not at all secure as I lurched forward! For me it is important to have both a shower and a bath, because I need a walk-in shower part of the time, but also need to soak myself in a very hot bath to help with pain and stiffness (although sometimes I get stuck and need a hand out).

A mask workshop in the Rialto

We were offered the hotel wheelchair to get around but I felt I didn't need it on the first day and soon realised I would have needed someone super fit to push me around. The flat areas were fine but there are simply so many bridges! If permanently using a wheelchair I would have been able to explore the more tourist areas such as St Mark's Square, but trying to negotiate small bridges was impossible and the larger bridges passed St.Marks looking out to San Giorgio Maggiore were ramped, but so steep mum would never have been able to push me up and over them. They have tried their best to make an inaccessible city accessible, but the nature of Venice is the tiny streets, ornate bridges, and canals. The best way to get around and cut down on walking was to get a week's pass for the Vaporetto; the Venice equivalent of the bus. Payment for a week covers the whole area and you can hop on and off anywhere you like. This was excellent for me because we could drop off at a stop in each different area and explore a little way before moving on. It made it possible to see more of the city without doing all the leg work. Although, for me, the problem was wandering further than I ought because I couldn't stop looking at everything. It was also very easy to get lost, adding to the time on my feet.


The extra time gave me ample chance to explore the different areas and take some great photographs, while also making sure I had rest breaks in between.

Florian Piazza San Marco

My highlights of the week are many; the first glimpse of a turquoise canal with a gondola moored under a geranium covered bridge; the first time the vaporetto turned into the Grand Canal; visiting the memorial to the Holocaust in the Jewish Ghetto; afternoon tea at the Hotel Danieli; dinner under lamplight at the side of the Grand Canal; the eerily beautiful mask and puppet shops; the unexpected dome of painted cherubs inside an ordinary red brick church; macaroons and hot chocolate at Florian in St Mark's Square; getting lost in Castello at night with the glow from the costume shops lighting our way; sunshine in Santa Croce and the way it looked inhabited from one angle, but deserted from another.

The things I find difficult going away are timings for breakfast - I am very sleepy in the morning and extra time to get ready means an early start to make breakfast before they finish! If I get up early I find I need a nap in the afternoons. I have to take short trips out and be able to return to the hotel when tired. I was still affected by the short plane journey, but once you add up a train to London, the underground, the Gatwick Express, a shuttle, the plane, then a boat it isn't as straight forward as a two hour flight any more! I picked up a bug on the way out that settled in mid-week and became a chesty cough, sore throat and headache. I felt weak and had to stay in bed for a couple of mornings. On my return both me and mum had a chest infection that has taken six weeks to shift. These are the drawbacks of travelling with a lowered immune system.

the beautiful Santa Croce

If I manage to save enough to do this again I would book an apartment in a quieter area of the city for a longer stay. This means I could pick and choose when to get up, when to eat and also have rest days between active days to balance things out. I would also take emergency antibiotics and maybe travel by train instead with a stop in Paris. This way I would see somewhere else, but would also alleviate the dryness, the swelling and fatigue of flying. I would base myself in Santa Croce, the area I fell in love with on the last day because of its faded beauty and the terracotta colour that gives off warmth. I loved the tiny canals and the greenery that is slowly beginning to take over the buildings as they decay and sink. The reflections off the water were stunning and I felt relaxed walking through the tiny alley ways. Every square had a small bistro or coffee house and there were greengrocers, and small food shops to forage through. I felt as though I was strolling through another time and the bustling areas of the Rialto and San Marco seemed very far away.

Moonlight over the Grand Canal

No matter the difficulties, this was an incredible trip and I wouldn't have missed it for the world. Venice is magical; appearing one way by day and another by night. It has an enchantment that is timeless and hard to resist. The food was incredible and it is possible to be happy just wandering and browsing all day without paying a fortune for certain activities or museums. Going into the more studenty area of Dorsoduro reveals a more bohemian Venice, with wider canals, small leafy squares and buskers and art galleries galore. Cannaregio with its market area, charming Jewish bakeries and washing strung out high above the canals was a Venice where real Venetians stop for coffee, walk their dogs and visit the synagogue. San Marco was elegant but noisy, full of tourists having their pictures taken with pigeons and their masks on. The Basilica overlooks the piazza with its elegant coffee houses and extortionate art galleries. I never tired of seeing a new bridge or balcony and some of my photographic efforts can be seen here. I bid Venice farewell on our final sunny evening, knowing that although I need to find a more comfortable way of being                                                                         there, I will certainly be back.