You and I have memories
Longer than the road that stretches out ahead.
1985 – 2005
You and I have memories
Longer than the road that stretches out ahead.
1985 – 2005
Hello, yes it is I, AFJ.
Funny story, I did plan to write film reviews, but here’s what happened shortly after my last entry. My laptop died a terrible terrible death, so not only was I without a desk with which to put my laptop on so that I could type up entries with ease, I was without the whole kit and kaboodle to type on.
It has been hell. But here I am, on a borrowed keyboard set up, and I want to talk about something which is kicking up a fuss on the internet that has me concerned.
As you may know if you read here regularly, I am all for saving the planet and cutting down on waste. I think frivolous purchases don’t do anyone any good and I think the throwaway culture we have is destroying the planet. I still have a fountain pen that lasted me 11 years, through my GCSEs, my A Levels, many hand written stories, uni the first year and a bit of uni on the second attempt, in my drawer in the hopes one day I can get it repaired. I find it disgraceful that we’re encouraged to just throw away things which at one point could have been repaired and buy new. So I really don’t say this lightly.
Do not take plastic, disposable straws away from shop shelves. I’m not asking, I am telling whoever is in charge of this world-wide campaign against straws: Do not take them away, it will have an inproporitonate negative affect on those of us who need them:- The Disabled Community.
Over the last year or two, things which have been, or could have been useful to disabed people have been mocked and revered by the able bodied eco-friendly campaigners. Explanations for how certain things make all the difference to disabled people is met with condescention and virtual shrugged shoulders. I am, of course, talking about the night everyone on twitter was up in arms about pre-sliced oranges in plastic containers, and pre-peeled avocados in similar packaging. And the latest item to be villified are straws.
I first became aware of this campaign when I saw this article on the BBC Website, which is worded slightly differently now than it was when I first read it. What has become a third-party re-write was originally an opinion piece by waste management spokesperson, Mark Hall, about how awful straws are and how anyone over the age of 12 using a straw were failing at being an adult, with the title of the article being the provocative statement “Only kids need straws with their fizzy pop”. An able-ist statement if I ever saw one. The article went on to suggest alternatives that should be used, and agian, only for children.
What these campaigners such as Mark Hall are failing to acknowledge is that many people depend on straws, and the alternatives are just simply not as good as what we currently have right now. I say this as somoene who only depends on them infrequently, but when my back and neck sieizes up I’m not able to lift a cup to my mouth and drink from it, and I certainly can’t tip my neck back to finish off a well earned cup of tea. Many of my friends are in the same boat, all of the time. The only way they can drink and stay hydrated, without having to have an invasive operation or depend on saline solutions delivered by a drip system, is by using straws.
I have read on twitter that wax paper alternatives don’t last as long as their plastic counterparts, they can be warped by heat. Are disabled people meant to just stick to cold drinks? I have also read reviews about metal ones, some people have found they’re not able to clean them properly, even if they have a washing machine. Usually there’s a public outcry if a children’s drinking cup or bottle catches drink remnants and goes mouldy, but claims on straws are met again with shrugs. As if those who use straws should just expect to ingest mould every now and then as a punishment for using something deemed childish and unneccessary by some. It’s not just a worry about the types of drinks that could catch in the straw, many medications come in liquid form which also need to be drunk and i don’t think mixing them would be a good idea either.
I’m aware my opinions come from people who might not know what they’re talking about, but I think I’d rather take my chances with people on twitter who have no stake in their claims, over businessmen who do and haven’t thought about the implications of their opinions and attitudes. And it’s one thing to have to scroll through the fire and fury people on facebook direct at novelty straws and multi-packs alike, it’s a whole other to go in to shops looking for straws and being told they don’t have any due to request of the public, which is starting to happen.
Campaigners might be patting themselves on the back, but disabled people are worried about being left thirsty or having to resort to drastic measures just so that they don’t dehydrate.
This is a personal blog, which I haven’t written in a while.
I have an exam in a month’s time and I am very worried about it. I do not have the best track record with exams. I struggled to revise for my GCSEs, when I tried I did not take anything in, and when I didn’t try my mind was filled with everything but important information. When it wasn’t instinct to me, I did badly. When it involved maths, I did very badly.
My A levels, it didn’t matter how hard I tried, how many different ways I tried to revise – group revision, flash cards, write and recall, I went in to those exams knowing I knew this stuff in the back of my mind but couldn’t get my answers into order, and subsequently came out with a Two Ds and an E.
I swore off taking another exam again after that. I am no good at them and in my mind, I’ve recognised a limitation and done my best to stay within it. I don’t know what it is about them, or about my brain, but we have never worked well together and my results almost always reflected badly on my capabilities. And now I have more health problems than I did back then, so I have more to battle against, in exam conditions. Which I will be sitting on very little sleep because I know for a fact I’ll be kept awake all night thinking through what questions I might face and going over how I might answer them, and all the things that might go wrong.
So when I say I am worried about this exam coming up, I’m not saying it lightly. This isn’t a plea for complements about my level of intelligence or knowledge on certain topics. I don’t want to hear “it’ll be fine” or that I “can do it”. I don’t necessarily want to be told it won’t be fine or I can’t do it, but I want acknowledgement that it might not be fine, because when it comes to exams, it just never is. I don’t want people to act as if I have nothing to worry about and that I’m being silly. I don’t care if this is a new me and a new course, and that my last experience with exams was years ago. If anything, that’s more reason for me to worry. My last exams were years ago, I was in the settings of exam preperation for the last few months of of 6th form and I don’t have that now, here, on my distance learning course as an adult and I can’t replicate it.
And if I don’t pass this exam, it’ll be two years worth of work on the line and I will have to take a resit in September, and if I fail the resit, the last two years will have gone to waste. Because whilst you can retake the year, I sure as hell am not repeating this module just to meet another exam at the end of it, and I’m no way dealing with the SFE for any longer than I have to.
You might be thinking, “AFJ, you’re putting the horse before the cart” and that might be so, but it’s hard not to when I’ll be sitting the first exam I’ll have sat in years and my health is nothing like it was back then, and I can’t see me passing this exam in those circumstances. I have memory problems from being tired all the time. I have always been bad with numbers, now I’m worse. I forget words in the middle of sentences. Because of me being tired, I don’t deal well with early mornings anymore outsde of insomnia bouts, and I flag again by either mid-morning or early afternoon. Just the travelling to the exam centre is going to have a toll on me.
I can construct a hell of an essay with the information I have learnt to hand, to read and double check details, and when it’s a good question to answer, I can do it quickly. But this will be an exam, I won’t be able to edit as I go along to re-structure my essay, I won’t have any resources to hand to refresh my memory and just the stress of having an hourly deadline will the situation harder for my body to deal with. I will have to dictate my answers to an ~emmanuensis~ which I haven’t needed to do since before my GCSEs (Or possibly during, I can’t remember if I had any scribes during my GCSEs but I remember my hand writing going very downhill during my geography exam) so that’s an extra element. And I know for a fact that even if I last the exam and I give decent enough answers, I will have to face the fall out my body will feel due to putting myself through that.
There is nothing good about this up and coming exam and I can’t emphasise this enough about how worried I am about it. I might know my stuff because I’ll have learnt it, but I might not be able to recall it on demand. I know for a fact that anything interesting I tell people, I sound like a fool who doesn’t know anything because my brain “vagues out” on specifics like dates and names of people.
And now for the biggest source of my frustation:
The Open University is meant to be the ~maverick~ university for those who, for whatever reason, can not or would prefer not to attend a regular “brick University”. It was meant to be open for everyone, no matter their personal circumstances. But in the last few years, they have been bringing themselves in line with other “mainstream” universities, it also means switching the EMAs to Exams. (Not to mention the expense, no more Educating Rita at the Open University!)
I have believed since I was 16 and sitting my GCSEs that all exams are, are memory tests. And they’re not even accurate memory tests, because evidence shows that stress affects memory and ability to convey information as accurately as we have learnt it, and exams are that stressful hardly anyone is able to do as well they would be able to in, for example, a relaxed conversation about the topic. So I really think switching EMAs to Exams really pull the rug out from under disabled students in a variety of ways, but especially for those of us who are unable to sit for long periods of time and have memory problems, whether nuerological or tiredness-induced. An EMA, which allows for well constructed arguments to be made when the student is at their best and a deadline of two to three weeks, I think is far superior to testing to see whether a student has grasped the concept, but hey, what do I know? I’m just a student.
If you have any practical advice, please feel free to suggest it.
If you have platitudes, you might mean well but I don’t want them.
May has announced a Snap General Election to be held in June: http://www.bbc.co.uk/news/uk-politics-39629603
Please, if for some bizarre reason any of you voted conservative, maybe family loyalty, maybe as a one issue voter, do not vote for them again. They have killed so many people with their policies, to vote for them Yet again after what we know from the Coalition would be saying to me “Yeah I don’t care if you suffer and die”.
At this point, I don’t care if you didn’t realise it would be this bad last time now, despite everyone who would be affected screaming their lungs out trying to inform you all, but if you see all of this chaos around you and think it’s what we need more of, then you are part of the problem.
Think of the future, don’t vote conservative. Preferably, vote Labour. I know, I know, they’re not perfect but they’re the only ones outside of Scotland who care even a tiny amount of the issues real people have. Under Jeremy Corbyn, they are the only ones who have fought for disabled people and carers. They have been infiltrated by Blairites and they have caused the problem, but look at the fundamental issues of the real labour members. They aren’t perfect, but they’re our best bet to get perfect.
The last election, out of the people who voted, Conservatives got in with about a third of the turn out. The rest was made up of people splitting themselves between the rest of the parties. If you add up all the left wing parties who were voted for, you get just under 60% of the vote, but because that is not how the system worked, Conservative got a single biggest chunk of the pie, so they got in.
Don’t let the break down of the voting pie go the same way. Labour have historically given more to the majority of the people, see the social security and the NHS as evidence.
I know it’s not much of a celebration. Frequency of posting is way down in comparison to last year, and for the last two years, this here blog has been more inactive than active.
But, I am still here! And this is 6th year of being here. So for that alone I am happy, and I hope you are too.
Watch this space, we’ll make it to the 10th year together, and with any luck, we’ll also ring in 100 entries in that time too.
Hello Everyone who may or may not be reading this. It has been a while, yet again. I still don’t have a desk so I still can’t type in comfort, and so for a few months there, the priority of typing went to my essays, which I had to write to pass my first year of university. It was very difficult, let me tell you.
So, by the time I had any time to spare, so much had happened that I didn’t even know where to start. On top of my own personal ups and downs which slowed me down, this country went through so much in so little time that we could make a whole new version of Billy Joel’s We Didn’t Start The Fire based on the last 6 months alone. By the time I was able to get down my thoughts and feelings about an event of whatever sort, people had already moved on and somebody else had written my thoughts and feelings in a much better way than what I would have done.
So what exactly has happened through the year so far and why couldn’t I have written about it at the time? Well, if you read on, you’ll find out.
First of all, Ian Duncan Smith Resigned. Huzzah!
Apparently all he ever wanted to do was to help disabled and poor people into work. And the proof is clearly in the pudding with their Concentration Camp motto (Work sets you free!), the sanctions leaving people without money to attend the job centre or job interviews, sanctioning people for going to job interviews on the same day as a job centre appointment (despite people informing the job centre and being given the AOK by the person on the phone). God forbid you had a heart attack on the same day as a job centre appointment or a work capability assessment.
I said Good Riddance to IDS, but knew that whoever replaced him would be the same, or worse. (Different Monkey, same old zoo). And whilst I was saying good riddance to him, I was also dedicating as much time as I could to writing an essay on Benin Bronzes. I found that was the hardest essay I had to do, made harder by my limited time I could type for. And made even harder one night when there was an intruder in the back garden. Then I came down with the flu.
Then, shortly after IDS left, the Tories proposed to cut ESA by £30 to bring the Work Related Activity Group’s payments in line with Job Seekers Allowance. Here’s the problem with that, and I do believe I’m preaching to the choir when I say this but just incase there’s someone form outside of the echo chamber here: People in the Work Related Activity Group are people who are still unfit for work or only able to do minimal work. This idea that cutting a safety net in order to entice people into work does not work, and it’s really not going to work for people who can’t work in the first place. It is like putting knives on the inside of a maze that blind people have been made to walk through as a guidance technique. It’s no actual use and only hurts people. It’s unnecessary and cruel.
The problem when you’re disabled and sick is that you might have to call in sick at the last minute, have many days off for being sick or hospital appointment, or hospital stays; Or once in work, leave early or not work much for multiple days on the run. I’m not saying disabled people can’t work, because clearly many of us can, but I am saying some of us can’t no matter what accommodations are made, and some of us can only with accommodations, and employers aren’t willing to accommodate and colleagues can and do become hostile. And this has been proved time and time again by employers who employ less qualified people than the more qualified applicant who just happens to be disabled, and when they force someone out of their job by constructive dismissal. It is experienced by teachers who are told they’re being unprofessional by sitting down to teach and are not given classrooms that are wheelchair accessible; administrators who are refused accessible set ups and find the quality of their workload suffers as a result, and find complaints about their work get continually logged against them.
Despite being bounced between the House of Lords and the House of Commons, the pleas were ignored by the Tories yet again and in their own interests alone pushed the proposal through. MPs, who get paid almost £75,000 per anum, and their living expenses paid for, and feel they can’t afford £15 lunches on their salary or even 55p for a cup of horlicks have decided that disabled people, who face extra costs in life ad have no other income, should live off £73 a week.
And what was I doing whilst this was happening? I was catching up on the two and a bit weeks of Uni work that I fell behind on due to coming down with the flu. It was back to back, three lots of chapters and an essay to do for an extended deadline, and then straight onto the chapter I fell behind on, when used that week to write the essay. It was exhausting and painful, and I was slowed down yet again by a strained back that does not like me typing for very long.
“Oh but this entry is long” you might say. Well, I’ve been working on this entry since before september!
May is a bit of a blur of essay writing and ranting about Me Before You. In the days leading up to my final essay of the academic year, the world was psyched about a film many in the disabled community found insulting and offensive. The general public did not understand and did not care. People said that a film deserved to be watched in it’s own right and for people to decide for themselves whether it was disableist or not. The biggest problem with this line of thinking is that, oddly enough, people who aren’t part of a miority demographic usually fail to see the micro-aggressions set up against that demographic. This film, based on the book of the same name, essentially was about a man who was paralysed and didn’t think he had anything to live for, because life is so miserable in a wheelchair. His parents managed everything about his care, and hired him a PA, who he initially didn’t want because of the aforementioned feelings of having nothing to live for. Then he fell in love with his PA and still felt like he had nothing to live for so (Spoiler alert), so he gets an appointment with Dignitas and goes and kills himself. It was both flawed and offensive, to both disabled people and those who provide care. The main character wasn’t even played by a wheelchair user!
And may I just say, a point I didn’t see many people make: Someone who is paralysed from the neck down would absolutely have a head rest. It’s not just a support for those who can’t control their heads, it’s a safety measure to protect the tendons in the neck. Any impact to a person sitting down can throw your neck back, and with no headrest, and little control in the back to lessen the movement, the tendons can overstretch and become permanently damaged. Can you imagine driving a car without a headrest? No.
For the record, my essay was about the history of the modern holiday and I finished it with 10 days to go to the deadline. I then woke up on the day of the deadline and remembered the title was not underlined, so I had to fix that up quickly and re-send it.
In June, the Wheelchair Vs Pram debate went to the supreme court. We are still eagerly awaiting the outcome. Anything other than Wheelchair users having priority will be an insult to disabled people. I shouldn’t have to explain why, but I will:
Everybody should have equal access to public transport. Many disabled people put their lives on the line 30 years ago to get us that access to public transport, and though what we were eventually given is Still not we can call equality, it is something. One space per bus and train. Giving wheelchair users priority for that space over prams ensures that wheelchair users have equal access to get on the bus. The idea that it is first come first serve is an insult to those campaigners who fought against the establishment to get those spaces, whom without their fight we would not have those spaces for pram users to mis-use in the first place. It also makes no sense. Without ensuring wheelchair users can get that space, wheelchair users are prevented from travelling, therefore that is not equal access to travel.
We have one space between many of us, and regularly we are up against each other for that one space. Why on earth should prams, which didn’t even need a space until a wheelchair space was built into the designs, get priority? Our parents and their parents managed just fine without, with lifting folded prams on to the bus, with walking to and from places, why can’t this generation? More importantly, if buggies need more space, why on earth aren’t parents doing the campaigning for them? Why must disabled users always have their accommodations become general use to the detriment of their lives?
Then we had the farce that was and still continues to be Brexit. We all know how that turned out. Whilst I was awaiting for the results of my final essay of the academic year, we had one of the most important decisions to make as a country. This country, which couldn’t even be trusted to name a research vessel sensibly, was instilled with the future of the United Kingdom.
People bought into the lies and those of us who faught to remain in the UK were called scare-mongerers, naysayers and bleeding hearted lefties. It apparently wasn’t about race, except people have admitted they thought they were voting to “get the immigrants out”. It was about this country being over populated, it was about the NHS buckling under the pressure of health tourists. Well, what happened to the £350million the Leave campaign promised to pay to the NHS? Oh, apparently they didn’t make that promise, it was a figment of all our imaginations.
The pound is now at it’s lowest it’s been in a very long time, people who were not born in the UK are all facing mass deportation, including the many nurses and doctors who keep the NHS functioning despite it’s chronic underfunding. And the NHS won’t be getting any money at all, despite really needing it. “Back to British Values” seems to be about taking us back to the Victorian era, with a nice stop off to the third reich on the way.
We all know what happened after that. David Cameron Resigned. Andrea Leadsom, Michael Gove and Theresa May all entered the race to become the next Prime Minister. Then Michael Gove dropped out so it was down Andrea Leadsom and Theresa May. Then Andrea Leadsom made some silly remark about this country needing a mother, and because Theresa May isn’t a mother (a very sensitive issue) she couldn’t possibly understand what this country needs, and a backlash followed, and she subsequently dropped out. Apparently not because of the comments, the timing there is just purely coincidental.
Now, I never thought Theresa May was the best person to be Prime Minister, but it has all to do with her beliefs and voting policies and nothing to do on whether she is a mother or not. I may dislike the woman, but a remark like that is just not needed or wanted. Leadership skills does not depend on motherhood.
All the same, anyone else would have been better than Theresa May, who’s voting history was worrying for the disabled, unemployed, women, children in school, teachers, people who emigrated to the UK, people born in the UK to non-British born parents, asylum seekers, and people who work for the NHS. And now she actually is Prime Minsiter, all my worries are coming true.
Whilst all that was happening in the interests of the General Public, I got some great news! My hard work and backpain paid off. I passed my first year. I also did more interview days, which were hit and miss. Mostly miss as many unsuitable people applied and people with good CVs did not turn up to their interviews.
Then we had the farce of Jeremy Corbyn, the leader the grassroot voters all voted for, having to go through another leadership election because the PLP did not want him in charge. Call me cynical, but maybe that’s because they were all Blairites and Tory Lite and a man who does believe in pandering to well paying friends frightens them. The man is not perfect by any means, but he has been one of very few labour MPs who has consistently fought for disabled people’s rights when we hardly rate a commiserating shrug from others.
He was up against Owen Smith, clearly a blairite in left clothing, who believes in austerity and the work capability assessment. Then Angela Eagle joined the race, after crying on television saying the labour party needed unifying. She cried about how awful it was to work under Corbyn because he didn’t listen to anyone… and then, she announced she was running against Corbyn, surprise surprise. Except her campaign start date was actually dated 3 days before she announced it, and a day before she cried live on air saying she was leaving because she couldn’t work under those conditions. Suspicious timing? What suspicious timing!?
She then said her life was put in danger when a brick was thrown through her office window. It was then revealed that the broken window had been there a while, and it wasn’t even Angela Eagle’s office, it was the window on the stair case shared by many offices. Then she resigned, so it was just back to being between Jeremy “Fair society for all” Corbyn and Owen “Abstained on the welfare cuts vote” Smith.
Whilst all that happened, I had one good interview day and had to choose between two very good applicants. Looking back, clearly I chose the wrong one, as the person I hired did not turn up to their first call, I couldn’t get through to them over the phone, they did nothing to contact me, and they didn’t even get in touch when I sent them a dismissal letter.
In summary of my months off from uni, I was sick a few times and bored quite frequently. I watched a lot less films than I planned to, but I did manage to read some books. My hospital appointments all came in thick and fast as multiple clinics all wanted to see me, and see me again after test and scan results went through. Days following hospital appointments were spent in bed. Twice I was at the same hospital two times in one week, and I almost had it happen again recently but I had to cancel due to being sick with the flu again. (What, you don’t get the flu twice in one year?!) My plan to get drafts off my plate and onto here fell through, as no PA meant no trips to the library to work in a more comfortable setting. Some extra physical mobility problems meant I was prevented from going further with trying to work at a desk at home.
I am now back to Uni and dreading the first essay of the academic year. The good news is, common sense prevailed and despite the purge of Corbyn voters, won with 60% of the vote.
Honest to a god I don’t believe in, I don’t have a clue what’s going to happen next.
And that’s now you up to date. If you read all of this, then you, my friend, deserve a cookie.
Thank you very much for reading. If you feel there was anything I missed out, please let me know!
You and I have memories
Longer than the road that stretches out ahead.
1985 – 2005