The bad, the good and I guess it makes me the ugly…….

Yesterday my wife, LG and and Grandad took a trip to the cinema. This is no easy thing to organise in the first place. Our cinema choice is severely limited by access restrictions before even leaving the house. We have three in Norwich and one in Dereham. Dereham I am yet to try in my wheelchair however a recent purchase of a Spree book means this will change in the near future I am sure. Norwich is an issue as parking at two is limited which means only one really is an option for us. There is a multi storey car park nearby (within easy pushing/wheeling distance) and it has an abundance of disabled parking bays meaning it is ideal. Well in location at least.

It is an Odeon cinema and they have an extensive guide online, they tell you all about their wheelchair spaces, their premier seats and so on. Unfortunately in the Norwich one at least they don’t have premier seats that are accessible in many if any screens, I cannot sit in my wheelchair at the front of a huge cinema looking up to watch a film. The pain is unbearable, it leaves me with the choice of watch the film in pain or drag myself up stairs to comfy seats and watch the film in pain. Not much of a choice really. I have tried to call and speak to a person, but no efficiencies mean that it is an automated service. I had similar issues when trying to book seats for the Star Wars premieres, I cannot book me, a carer and 2 “normal” seats. I am becoming increasingly frustrated with cinema trips, they are anything but relaxing.

Follow this up with our lunch at Frankie & Benny’s, Riverside, Norwich and it was a completely different story. Usually I arrive at a restaurant and immediately a table is set and a chair removed for me to wheel up to the table. Now I’m not saying this isn’t good service, it is. However most restaurants miss one vital step, that is asking me if I can transfer out of my wheelchair (which I can) and whether I would rather sit in my chair or at the table. Why you ask, well wheelchairs aren’t designed to be sat at a restaurant table easily, I am often knocked or get my handles bashed, not fun whilst you are eating, and also because some chairs are more comfortable to sit on when eating. I want to give the staff here for top marks, first of all for asking the question, and secondly for asking me the question not the person who was pushing me. Top marks for awareness here. A simple, can you transfer from your wheelchair sir? and this is your table would you like to transfer and we can take your chair or stay in it were two fantastic questions and I wish I had taken the name of the staff to thank them properly. It is a small thing but it shows fantastic awareness. MY chair is my legs when I go out but I am not super glued to it. The Odeon could learn from this and offer alternative access/design and more comfortable seating options in their screens.

That leaves me the ugly, not much more I can say really………………..

Why Pavement Blocking is an issue for people.

Below is a link to the first ever video I have uploaded to you tube and social media. With it I posted the attached message

This morning I took this video showing why pavement blocking is a serious matter for disabled people and that they can’t just go down a dropped kerb when their path is blocked, sometimes you can’t see things blocking you and there is nowhere to get off the pavement. As we cut across the garden my 4 year old was saying how bad the parking was and how dangerous it was and that she felt naughty walking on someone else’s garden, she was right on all counts. This vehicle was blocking the whole pavement despite the road being plenty wide enough to not need to do it. I have deliberately not zoomed in on the van as this isn’t about slating a company it is about educating people as to why you can’t just step/wheel into the road as there is not always a dropped kerb to wheel down and for others there is no view to safely go into the road and round the obstruction. Had the garden had a little wooden fence like the first one in the video we would have been stuck. My daughter would have been guiding me back to a dropped kerb and we would have been late for nursery. All because someone didn’t think. So when you park, stop, check the road, is it wide enough to not need to be on the pavement, if it isn’t make sure the path isn’t blocked. If you are delivering goods to work I understand drop them off, have some one there to advise people and then move as soon as possible. This vehicle wasn’t unloading and had been there 30+ minutes before I took my video.

The video isn’t intended to cast any bad aspersions on the person who parked there just to highlight the difficulties it can create. I will be the first to admit that before I became disabled I didn’t think about this when parking and it is only now I realise the issues it causes people. This is why I took the video. It is intended to educate not castigate. The van is still parked there some 3 hours later 😦

Conservatives the party to encourage work EPIC FAIL

Conservatives the party who encourages work! EPIC FAIL. With my disability my wife works hard to keep a roof over our head, a mortgage that we were encouraged to get, food on the table and clothes on our backs.  Now I need help from South Norfolk to put in a ramp to leave the house in my wheelchair on a bad day and we have been refused! The response was calculated that with four of us in our household an income under the high rate of taxation we MUST pay the first £55,000 yes fifty five thousand pounds worth of adaptations needed before getting help. In the past 5 years we’ve spent our entire savings on things like profiling beds, widening doors for wheelchair access, an adapted shower/wet room, a wheelchair friendly kitchen and standard things home owners have to replace like boilers and windows and we have nothing left. So I hope all those preaching you are rewarded under Tories if you work all have more than double your net income in savings incase you become disabled because if you don’t  the help isn’t there anymore. I quote direct from the appeal letter 

For grant contribution purposes, the calculation does not take into account your outgoings or whether indeed you could obtain a loan (with what we consider your disposable income).

The personal allowance they give a family of 4 to live off each week is £225 a week, that is to cover everything, housing, food, utility bills, clothes, running a car, childcare costs the works. Everything above that is considered a disposable income. 

So because we have a mortgage and an income that is above this (thank goodness as we’d not survive on that amount) we get no help. If my wife left her job to become my full-time carer we gave up our home and went cap in hand to the Council we’d get everything! If we were in receipt of income support, Housing Benefit, Universal Credit or Working Tax Credit we’d get a grant automatically. Now I’m not belittling the people who need these benefits to survive, far from it (it is a sad indictment that the 5th richest nation needs these things).  I’m simply saying that getting help if you are working trying to help yourselves that is supposedly the value the Tories encourage and will help is total bull. Now don’t go on about those cheating the system as it happens from the biggest corporations in the world, through rich celebrities, business people and stars, through self employed people working cash in hand, employees taking cash bungs through to the element of benefit cheats. Right throughout society there are those who cheat the systems and some cost us more than others, and then there are the honest hard workers, the businesses that pay, the people who don’t use tax loopholes, employees who declare cash gifts, unemployed desperately seeking work, single parents trying their hardest and disabled people reliant on family members and these are the majority of decent people making the best of their situations. 

All those saying that it is labour who encourages this type of behaviour and a dependency on benefits let me assure you that it is not the case. All parties encourage this. Labour and Liberal Democrats however want to help low income workers, the so called lower middle class as they recognise they have limited incomes and everyone’s personal experiences should be considered when making an assessment not a blanket income is to high even though we don’t know your essential outgoings. The conservatives want me to be a prisoner in my home whilst we try to better our family and be good role models for our children, they don’t care about our outgoings versus income, they don’t care we have mortgages and bills to pay that all contribute to the economy not just taking money away from it and making it impossible to get help. 

Worse still if I go in a home they want to take the value of that hard earned house purchase to pay for it and for it not to go to my children. Whereas if we spent all our money, rented a home and had exotic holidays, new cars and spent everything, or my wife gave up work to care for me,  we survived on benefits we’d have all the adaptations paid for and more money than we have now to spend on days out and birthdays etc. Yes you read that right and I know people in that situation and how little they have. We struggle on doing the “morally right thing” according to the government but we will have nothing to show for it, and will have to beg, borrow or steal to get a ramp so I can go outside on a bad day. 

Tell me where is the sense in that! Let me assure you of one thing today, a vote for the Tories is not a vote for people with moderate incomes who work it is a vote for the mega rich and if in the future you ever need the NHS, have children, own your own home or have the misfortune to become ill/disabled and need help you won’t get it from them. I sit here now not knowing how I will get my daughter to school and home again everyday when a ramp and wheelchair would correct this. We have no money left having spent around 3/5 of the amount and again I quote the appeal “your amount of savings or ability to get a loan are not considered in the application for adaptations” 

So all our hard work over the past ten years of marriage saving money, not going abroad every year, making sure we don’t have the latest gadgets, or biggest televisions has been wasted. We’ve had to spend all our savings that would have protected us if my wife is made redundant, so I can at least get to the bathroom and bed, but I still can’t leave my house! We may as well have wasted it all, stayed in social housing and then the adaptations would all be done, my wife would be home to see our daughter and do all the school trips, stay and plays and assemblys and we’d have more disposable income now than what we have with her working. 

Instead we are fighting every system, waiting on appeals so I know in an emergency I can get outside,  and worse still what we thought would be left to our children one day now probably won’t be. 

All I want is to be able to leave my house……. Think about that before you leave today to put your X in a box as I may not even make it to the polling station. Postal Votes I don’t trust may be my only way forward and I can sit and stagnate in a reclining chair watching the seasons go by. SAD TIMES INDEED. 

Now I don’t believe one party has all the answers, our voting system is antiquated and set up for an era when there was just two choices and this needs to change. Most of all however is stop cutting funding to public services, stop paying your chums millions in strategic reviews each year and treat people as individuals as that’s what we are, individuals! 

The train to nowhere…..

All aboard should have been the delightful shout heard today, however the more accurate shout would have been “all aboard, except the gentleman in his mobility scooter and his daughter”. Not such a welcoming call. You see, very rarely my wife has a quieter day and work, and is able to take a lunch break. Today was one of those days so she messaged me and said did I fancy meeting her for lunch with our LG after nursery. Since she will be starting full time school in September I thought this was a lovely idea. The only issue was how would we get there?

Yes I have an adapted vehicle and can drive, but some days I know my pain levels are such that my mind and reaction times are affected enough so as to not want to get behind the wheel. Other days driving alone (without someone else who can take over from me should I need it) having taken my medication is not a good idea, so again I have to be sensible and not drive. It is one aspect of independence that cannot be changed as my safety and those of other road users is always paramount in my mind before taking any journey and this is easily accepted. I have firsthand experience of how life can change suddenly, in an instance at the hand or rather car of others and I would never knowingly put anyone else at risk of this myself. It is perhaps why disabled people are so desperate for the improvements to be made to public transport to enable them to still go about independent lives. However we can not rely on public transport.

Today to get to my wife for lunch it was either bus journey’s close to 2 hours meaning we would miss lunch or an 11 minute train journey, with two slight snags, firstly I needed to get on the train on my mobility scooter and secondly I needed to get back to Wymondham via a train also on said mobility scooter. This is the frustration of being disabled and public transport. Firstly everything has to be planned the nth degree meaning spontaneous lunches very, very, very rarely happen. Why? Well in order to catch the said train I had to call the train lines disability services, very polite and very helpful, although despite several back and forth conversations it took over 10 minutes to get confirmation of what I said initially, which was that my scooter is acceptable to be transported on a train. The only downside of this was that because I had not given 24-48 hours notice there was no guarantee that there would be people on the train in Wymondham available to get me on, off in Norwich and the return journey that would have to be via Attleborough as there is no access to platform 2 in Wymondham.

It is perhaps not so much a case of being on a train to nowhere and more a case of being unable to get on a train anywhere. This isn’t a grumble at the services which are provided as when they are booked they generally work well. It is more a frustrated plea that people will think beyond what they can do on a whim and more a case of asking you all to put yourself in someone else’s shoes and start to question what it is disabled people are asking for. To some it is expensive, money wasted, not a necessity and any number of other excuses I hear, to disabled people it is our lives. No last minute trips locally, last minute holiday deals not a chance, simple cinema trips require phone calls and whilst there are improvements being made these are not always done with a full understanding. I ask you all to engage with people, speak to people and see what it is people really need, and what would be an added bonus. There are many stories of people stranded on tarmac, soiling themselves on trains and so on, these are not norm but they do occur even when every effort has been made to book assistance. No imagine your boss calls you in for a last minute meeting, or asks you to travel to a conference in place of someone who is sick, or simply your wife wants to meet you for a surprise lunch and never being able to achieve those things. Would be frustrating wouldn’t it?