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 😦

Neglecting life…. 

This comes naturally to a spoonie neglecting life, even when you are consciously trying not to do it. The stress just makes sure that you end up doing it. I have found 2017 really tough. My health has been worse, important people in my family have been ill and diagnosed with cancer, my granny with the white hair who I’ve blogged about before passed away last week and a good friend who I have previously worked with and played football with died after a short but aggressive battle with Cancer the week before. It is undeniably an incredibly tough time emotionally and physically. The knock on affect is that my moods swing, people get upset with my mood and comments and not just the flippant comments but sincere ones to. 

I lie and say things are OK, but really inside my head and heart are shouting why, what the fuck! Every year I think next year will be better for us, next year I’ll have more time for my family and friends, next year will be our year. Once again I find myself wanting another year to be over in hope of another year being better. 

Now this isn’t a woe is me post as there will always be people feeling worse than me, it’s more of a post acknowledging that I am human and at times I need help. I have spent many months sorting a personal budget and a PA to help me, another big step in my journey of needing help. I am trying to sort a power chair, I have my PIP assessment paperwork to complete, my motability car contract to renew and my driving capability assessment to complete. I have another MRI scan because of my recent falls and tests for issues with my bowels and my diary is full. Not full with fun stuff but important stuff. The spoons just don’t go as far these days. 

Life is tiring at the moment and there are good people I have not seen in months. I’ve done two blogs in about 3 months and I’ve missed a number of WAG events. All of this makes me feel like I’m letting you all down. I struggle daily to get dressed and do normal things and I worry about most people before myself. It means the pressure builds and I forget things. Life has to be planned meticulously and I hate not being able to be spontaneous with my family and friends. 

It is even harder at times like this when I see friends and family mourning and missing loved ones and not being able to instantly drop everything and be there. So whilst I have been neglecting life recently please know it is not through choice but necessity. Some long battles and some short ones have taken their toll on me and the need for so much change has left me tired. I’m hoping things will improve but I always say this, so if you’ve been waiting for a catch up, a blog or even a text ping me another message, I will get back to you. I’m just prioritising spoons for DWP paperwork, social services paperwork and two funerals celebrating lives of two important people. 

For now peace out, be kind to one another, look for what makes you unique but also gives you shared causes to believe in and remember if I can keep on wheeling so can you! 

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! 

Speech Recognition – A first for me

This is the first blog that I am writing using speech recognition so this could be interesting to see what comes out. I have never used speech recognition before however with the pain I suffer regularly I am finding it increasingly difficult to compose my blogs and keep everything that I like to do up to date.
As part of the work I have been volunteering to do with Wymondham Access Group we have in our first year achieved a number of things, one of which is being given charity status and this enables us to access a number of tools via Google one of which is this speech recognition. I have written this blog using speech recognition in under 3 minutes this for me is amazing, I have not had to use my arms, I am sat back with my head, neck, shoulders and back all supported in my large custom reclinable chair. It is phenomenal for me that I have been able to do this and I hope over time I will get more used to using this tool and I will be able to write more blogs. It has been strange and it feels weird to be sat here in my house I’m not going to lie talking to myself, however I think everybody who knows me thinks I’m a little bit crazy anyway so I guess anybody listening in will not think this is peculiar.

I am now going to check through this blog and see how accurate the speech recognition has been whether I need to change a great deal of spelling and punctuation and I am hoping that the use of speech recognition within Google Docs will really help me moving forward not only personally with my blogs but with the volunteer work that I do with Wymondham Access Group. It has been a great privilege being the chair over the first year and I look forward to continuing in this role over the coming 12 months.
Having checked through the first blog I realise that the punctuation will only be in if I remember to say . , : excetera which funnily speech recognition cannot determine when a sentence has come to an end. Note to self next time you’re writing try and improve on this. There were only 2 spelling mistakes and these were on words that I think were misheard so for me it has been a productive way of writing a blog. I do however need to learn how to go back and correct words that I have already said and I need to make sure I know what I want to say so that I do not make sounds like um, err, hmmm, other than that I think this been a successful first attempt. Anyway I hope you enjoyed reading the first blog  as much as I have done speaking it, I know it doesn’t say a great deal however the smile I have on my face is huge, it has been without a doubt my favourite blog in many many months.

Pre-Election blues

I know where my X will be going in the upcoming county election, I know this will come as a surprise to many of you but this has been decided based on my own morals, impressions of the candidates, locally how they care about hometown and who I trust to deliver,  or try to deliver their promises even when this means going against their party leadership. 

For the general election my decision will be based on their parties records, their manifestos (once released) and my own individual research, these may be different parties in the May county and June national elections. This research does not include the plethora of biased news stories and memes doing the rounds. I say biased because the press is left or right wing and therefore interprets “news” and “statistics” to suit their own needs and not necessarily the truth. 

I respect all my family and friends and know there will be different opinions among us and you will be sharing things over the coming weeks. I ask you all please respect my request to keep my social media free from such posts, please do not tag me in them or share them to my timeline and I will reciprocate this. I say this because I see too many arguments that stem from politics and I know families who still are divided over the EU referendum. I do not want fall out over these elections with anyone. Politics like religion seems to divide people and cloud judgement so that all respect and understanding of others goes out the window. It’s as if people forget that there is more than one way to achieve the same results and I want to keep an open mind and friendships.