2016 So Far – An AFJ Summary

Saturday 22 October, 2016

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!


In Memorium

Sunday 16 October, 2016

You and I have memories
Longer than the road that stretches out ahead.
1985 – 2005

100 Entries

Friday 16 September, 2016

This time last week, a momentous occasion occurred! With my last blog “9/9/2016 – The Anniversary of The Start Of The New Beginning“, I finally hit 100 entries!

Under the introduction there is a banner with the words one hundred entries on it in two tones shade of grey. The words are surrounded by multi-coloured balloons with a golden seal of approval in the background shining through the words. There is an embossed effect on the words with cloth effect adding texture to the background

It only took me two years to get to 50 and this time it took twice as long to get another 50. It’s very sad for me to see my rate of blogging drop so much. I blame both the Tories and the fact that I still don’t have a desk.

But, regardless, I finally made it and if you’ve been reading all this time, I congratulate you. If you haven’t, please feel free not to go back and read my old entries. Baby!AFJ Entries are as bad as baby pictures. You wouldn’t want me to go to your house and look through your baby pictures , would you? No? Good, so we have an accord, as they say. (If you said yes, you’re wierd).

Here’s hoping I reach the next 100 sooner. I’m already that bit closer, this post makes it a total 101 entries so far.

Thank you very much for reading. Stay around and celebrate, have some virtual cake, put on your own music and have a dance. It’s an all night disco, my friends. This blog never closes!

Yours Failingly,


9/9/2016 – The Anniversary of The Start Of The New Beginning

Friday 9 September, 2016

Hello to the void! I don’t know if I still have any readers about this place but if you are indeed reading this, then I am indeed addressing you.

It’s cliché of me to say, but any perceptions of my demise have been greatly exaggerated. I actually have a half written entry on what’s been happening over the past 8 months that have prevented me from updating on the more regular basis that I was hoping for. And that will still come, but, it’s ironically also been prevented from being written updated by the same factors that have been preventing me from updating.

But anyway!

Today marks a year since my first self-hired Personal Assistant left and I couldn’t let the day go by without acknowledgement. Since I lost this PA (who I hired through a half care agency, half recruitment agency), my endeavour to hire my own PA, with myself completely at the helm, has been nothing short of a nightmare. And to be honest, the events immediately after my PA put her notice in was not all smooth sailing either. From the second I decided to have control who my Personal Assistant would be, it’s been one bad experience after another.

When my PA put her notice in and subsequently left rather suddenly – she actually put her notice in with intent to work her two weeks but because of bad health had to finish her notice on sick leave – my time frame to get a new PA went from two weeks to 0 days. She texted me first thing on the Wednesday morning, but the office didn’t even ring to tell me until 3 in the afternoon, 3 hours before I was due to have a shower call. They were meant to call me back to discuss it further, and they didn’t call me back. In fact I rung them back at half 4, done with waiting, only to be told “We finish at five, and it’s half four now….”. I was told I would have to wait until the next morning.

There was just no urgency of the matter, no sense of duty of care to help me hire someone to replace the person they suggested I hire due to her being on the books already, with very little hours. I was subsequently passed from pillar to post, I did not speak to the same person twice. I spoke to one person, they tried to offer me spare cover of whoever was available with no guarantee of consistency. I emphatically turned that offer down, I was told they would have to speak to their manager and call me back. They did actually call me back but only to offer me cover again. It was like I’d entered the twilight zone.

Then, they, unbeknownst to me, moved offices on the Tuesday. I was meant to be rung back on the Monday, and I wasn’t, so when I rung them on Tuesday morning and was met with a dead phone line, you can imagine what I was imagining! I was up the disability creek without a PA to paddle. When I eventually did get through to someone, I was told the person I’d spoken to previously had left her position (second time I’d heard that), and someone else would be put in charge of the situation, but I wouldn’t hear back from them until the end of the week at the earliest, because they were moving offices.

If I got one thing from all of these phone calls, it was that it was just an unfortunate circumstance that I would be left without care, but they were just really busy over there with their moving offices and changing job positions.

I think what happened after that really sums up my experience with Your Life, Your Way best though. After my final phone call with someone on the morning of 15th of September, 2015, I wrote a very thorough complaint letter to the managing director of the company and told them I’d decided, following that phone call, that I no longer wanted their so called services.

I was called up two days later by a member of staff trying to set me up with cover. My complaint had not only not been shared to other members of staff, it hadn’t even been read yet.

10 days after I sent my complaint, the managing director of the company emailed me back, first to apologise for my poor experience with the company, but then ended her email by stating I’d contacted her office since my email asking her to get in contact with me because I wanted to interview people, not just have cover sent to my house.

Does that message sound familiar?

After that, I decided to go at it fully on my own. I’ve talked about this before. I put up adverts, I booked a room to interview people in, I arranged interviews, people confirmed, and then came the day. I went ready and prepared, I had my best friend and my mum with me. They were going to be the Karen Brady and Nick Hewer to my Alan Sugar.

Nobody turned up.

The next set of interviews I organised, 3 out of 5 people turned up. I gave someone the latest slot I could give them because they asked for a later slot due to prior engagements, and they didn’t turn up. Following that, I had someone leave verbal abuse on my phone to someone called John. They never left their number but I recognised their voice from an applicant who never turned up.

Out of the three people who did turn up, though, I hired one person. I thought she was just perfect for the job, and I think for the first 6 weeks she was. And then something changed. I don’t know what brought it on exactly, but the first incident was her turning up late with no real explanation. Then it was a last minute cancellation where it was like a chain of knock on effects, her mum got called into work so couldn’t look after my PA’s son, so my PA requested to change days. These things happen but as someone with no priorities, I always feel like I can’t say no without sounding unreasonable. But the fact of the matter is, I choose these times and calls because they are the best time and days for me. And then I’d say the death knell was her getting another job for more money, which I understand was necessary for her, but it killed off any availability for me. I was then hurt in an accident which meant I had to rearrange calls, which was difficult because of the aforementioned lack of availability. Further late arrivals, and just had something changed in her attitude whilst she was here. I knew I had to speak to her, and her probation period was ending so the next call I had, I was going to sit her down and talk to her.

Before I even got to really play the role of the boss, she said, amicably and quite friendly, that she would have to put in her notice in, because her other job could offer her more hours, and she wouldn’t have the travel costs and it would just generally work out better. It’s understandable, and I suppose it saved me the job of having to ask her if this was a job she really wanted to keep.

The thing that sort of annoyed me on that, though, is that in the interviews I always ask how the applicants intend to travel to mine. I point out, if they take public transport, that Sundays have different time tables that might mean they can’t work Sundays after all. And around that 6 week mark, my PA started getting taxis home from my house because there was no bus home. The way it worked out she was spending her Sunday hourly wage on her taxi fair, and I look back and wonder if she resented me for it, for maybe not offering to pay for her fair for her.

Since then I have set up four more interview days in the interview room, usually arranging to interview 5 or 6 people a day, and many people have been unsuitable or just not turned up. It’s like I said last time, people were applying without reading the advert. I heard more than once that they thought they were applying for a full time job, and I just don’t know how because the advert specified, at that point, 6 hours a week, with the hours broken down into time and days of the calls.

I found two people I was happy with, and it was a hard choice between them. I have sadly regretted my wrong choice ever since. I went for listed experience over everything else, and I selected someone for a second interview – I was doing this slowly this time and not the rushed pace the social suggested. They came to my house and we chatted. I felt like we got on like a house on fire, so I  told her to think about it for a week, and to get in touch if they had more questions. A week later they came to my house to sign the employment contract. I had to print off so many things for the social to confirm I’d hired someone. I gave her a start date.

She didn’t turn up. I texted, I called, and nothing. I can’t tell you how excited i was to finally get a shower after 6 months. I was left disappointed, and confused. What had gone wrong!?

I eventually shook it off and decided to shake things up a bit, due to lack of all around availability, and I did phone interviews. It was a bit different. I couldn’t get a real picture of some of the people I interviewed and could only go on answers alone. But I found two people yet again I was happy with. I was planning to have further interviews, this time face to face at my house, much like with the last potential PA, to go through further details of the job and see if it was something they really wanted.

I called up one and arranged the details. I called up the other and…. Nothing.

Day of the second interview came for the applicant…. And they didn’t turn up either. To say I was disheartened would be putting it lightly.

It’s been 8 and a half months since my last PA left and seeing as I depend on my mum, who is disabled herself, this situation passed miserable and unbearable four months ago. Except for twice, I have only left the house with friends or for medical appointments, and those two times were quick short trips where I struggled to manage independently, but had to go out because I could not stand being indoors whilst it was gorgeous and sunny outside anymore.

There is no care agency – apart from the care agency I ditched for being unreliable, and I refuse to go back to them – in my area who will take a young disabled person unless they have either a mental health problem, a learning disability or a neurological condition. And I have none of those things. I have some sort of physical bone disorder that is something like osteoarthritis. I have to hire someone, and there’s some more applicants lined up to interview, but I am fed up going through it all – spending time and energy separating the wheat from the chaff, only to be disappointed at the end of the process.

It’s been a year since the last choice blew up in my face, how much longer will this reign of bad luck last?

Interview Etiquette: The Care Edition

Wednesday 17 February, 2016

I’m one of the many disenfranchised disabled people who’ve been left with no option but to employ a personal assistant/support worker directly through direct payments, because the care companies are not good enough or sticking to the high quality of care, including consistency, that they promise to their “clients”. The company I left the first one for was such a shambolic affair that I would suggest they change their name from “Your Life, Your Way”, to “Your Life, Every Way But Your Way, And Good Luck Hearing Back From Us Within A Week Even When It’s Urgent”. I would even organise a whip around to help pay for the name change costs.

It’s not easy going fully independent. There is paperwork, there is tax, there is insurance. There is the ever looming fact that it’s all on you if something goes wrong (Holy responsibilities, batman!), and if you’re not a confrontational person, you might find yourself wanting to dig a hole under your bed and hiding there if an issue does come up. But I was left with no choice, and I find myself, for the second time in less than 6 months, on a search for someone to employ.

I understand how the job centre works. I know because at a point in history I was subjected to Remploy’s practices, and currently have relatives under the power of Ian Duncan Smith’s misery-inducing regime. Advisers tell you to apply for all jobs, every job, or you will be sanctioned, so help you God. They tell you to ignore the stipulation for driver’s licences, levels of experience wanted, specified genders wanted, qualifications required, and sometimes they demand you apply for places you know can’t cater for your disability, all under the threat of Sanctions for non-compliance. I do understand all of that, and the job centre have to understand that it’s affecting employers as well, but alas, they don’t care in any direction.

But I do. And I, an honest understanding person, want people to be more honest and up front with independent, private household employers looking for Personal Assistant/Support Workers/Carers. I think I speak for a lot of people when I say it’s better for us to know right from the off rather than go through the motions of believing you want the job just as much as we want applicants. I’ve now had two lots of experience trying to find someone. The first time, I can’t remember how many people applied overall in the end, but on the first day of interviews, nobody turned up. Myself, my mum (of ill health herself) and my friend were in a little office for a good portion of the day, waiting for all the people who had confirmed their interview slots to turn up, and none of them turned up. The second interview day, out of 6 people who had confirmed, only 3 people turned up. I was lucky that amongst those 3, there was one great applicant worth hiring. But, over all, I was disappointed with the process on many levels. This second time, I had 9 people apply and confirm for interviews spread over two days, and only one person turned up.

So, I’m going to give people a list of What To Do/What Not To Do when you’re looking at adverts for a care job, based on experience I had with Applicants.

1) Either turn up or cancel. Don’t just not turn up, it’s rude. It waste’s people’s time and it kills any chance for a last minute offering to another person who might take the interview slot.

2) If you know you no longer want the job, even within 24 hours of the interview, let the employer know so that, again, they can try and offer the slot to someone else.

3) If you don’t actually want the job, because you’ve been made to apply for it, say so.

One applicant confirmed their slot but then needed a different time. It wasn’t possible on that first day, but I said I’d get back to them about the second interview day when I knew the time and date for it. I emailed them with the new details, and I heard nothing back. Just to double check, I gave them a call a few days later and asked if they were still interested in the job. They said they were. I said that I’d emailed them with another interview offer but heard nothing back. They said that they’d been so busy, they hadn’t had time to check their emails. I understood, because that’s happened to me too. They said yes to the time of the interview, they thanked me for calling them and letting them know about another slot, and they looked forward to meeting me.

They didn’t turn up.

4) Read the advert carefully. Also, consider what’s in the advert as well as what might be between the lines. Ask yourself if all elements are something you would be able to do. Think of the real demands of care, it’s not all shopping trips and making cups of tea.

Universal Jobmatch has a personal details safeguarding system where someone will ring you up to change the wording of your advert if you’ve put too many personal details or you’ve used exclusionary terms in your advert – They have restrictions on specifications, due to equality laws. I am not allowed to discriminate on any basis whatsoever. There are exemptions – i’m allowed to specify female carer – but there’s not many other exemptions allowed.

Sometimes the full role, the full expectations, even the times the job takes place aren’t allowed to be included, because of vulnerable adult safeguarding. And with UJ, I don’t think there’s a system that allows you to ask for more details. You, as a Jobseeker just apply and hope for an interview. Maybe you could use the email or the phone call from the potential employer to ask for more details, before an interview is confirmed and you find out there that the job is not something you can do, for whatever reason.

I’m talking about two experiences I had, and I’m trying not to get too specific, in order to save any potential hurt feelings. But basically, one experience was that I had at least two people misunderstood the advert, or misread the advert. My advert spoke about helping me, an individual disabled young adult, but both of these people assumed they’d be working as part of a team and caring for the elderly.

The other experience is that, although I’m not allowed to discriminate, people with their own mobility problems also applied and it was clear they didn’t realise how physically demanding a job it can be. I don’t need lifting and handling, but there is walking on their part, manual wheelchair pushing, steep slopes, a lot of standing up, and probably other micro-necessities that I can’t think of right now, that you really only notice when you can’t do them. I’m talking from experience of being on the other side. It’s one thing to ask someone to pass you something, it’s another thing to reach up, grip an item, hold and carry the item, pass it over… and then do that all again in reverse when they’ve read the ingredients on the back and realised they’re allergic to it.

For the most part, the lack of disabled people in work places, in various industries, lifestyles, is a lack of effort by the employers. But physically assisting a fellow physically disabled person is not one of those jobs that can really be catered for, and that is something I learnt years ago in my more mobile days, from assisting my friends less physically mobile than myself, to the detriment of my own health. It takes compromise for that to work, for both people to be happy, and quite frankly, to me it’s a compromise enough employing people to depend on. I had just had a PA from YLYW who had her own disability, and though we muddled on, it made planning things difficult. Can we get to this train station in time to get to this place or home in time? Will she be able to carry this today? If the weather’s bad, where will we go, because she can’t push manual wheelchairs up steep slopes and my electric wheelchair doesn’t do bad weather?

Selfish as it may sound, when you only have a guaranteed four hours a week to leave the house, you want to make the most of them, and you need to be sure the person with you is 100% up to the job. I’m not able to offer trial shifts, I have to go with my feelings during the interview.

6) Ask yourself if a permanent, long term care job is something you really want to go for when you know you’ll be leaving in less than a year.

This is a job with a three month probation period to work out kinks in the system and talk through any prospective problems that may pop up. It’s a job where you get to know each other, you get used to each other, and though you might not be friends (Mostly not recommended, though on one occasion it has worked out wonderfully, and not to get too sappy here, but she has kept my spirits up during this whole debacle), you will become a significant part of your employer’s life. You might leave your job at the doorway, but an employer in this capacity is a disabled person who will depend on your consistency, care, empathy and professionalism. Availability is a commodity worth it’s weight in gold, yet we all know the pay is pennies thanks to the government.

It’s understandable that you have better plans for the future, but your employer might need to depend on people for the rest of their life, and people coming in and out of their life every 6 months can be upsetting and unsettling. This isn’t a holiday job. If you’re after a temporary job, go for a temporary job or an agency job, because god knows nobody expects consistency with agencies. If not for nothing else, think of how big a pain in the arse it is to go through finding a new PA, and dealing with the lack of care package facilitated in the interim, every 6 months when their employee leaves cos the better job they had lined up, because of uni, because of whatever comes up.

7) Follow what the advert asks of you. If the advert asks for CV, apply with a CV. You’re not going to impress anyone with a request for an interview if you’ve ignored what the advert asks of you. Especially when it’s a job where you’ll be doing a lot of what the employer asks of you. You’ve basically failed test number 1.

I’ve had a few applicants say that they don’t know how to send a CV. And whilst that’s something I can believe, because not everyone is computer literate, there is an “Upload file” button right above the message block with the extra information of “Use this to send your CV”. If you really can’t upload your CV for whatever reason, you need to offer an alternative. Copy and paste it into the body of the message, or link to another site which does host your CV.

Just evading the request won’t get you anywhere with anyone who is trying to protect themselves from bad applicants, you’ve made yourself look questionable and you’ve caused yourself to blacklisted.

People wonder how so much negligence happens in care homes and care companies, and it’s because people aren’t properly vetted. Private, independent employers like me can’t do much, but faith in a CV and follow up references are one way. I think some people scoff at my over-professional tone and my fastidious nature when I go into Employer mode, but I’m not just going to give the job to someone who sends me a message in text talk promising me they’ve got the experience. Where’s the proof? It’s my health and safety in your hands, here. Give me something I can work with.

8) Ask questions and be honest. One bad piece of advice I was given before the first round of interviews was to tell the applicants what I wanted from them, under the misguided belief that if the applicant doesn’t feel up to the job, they will say so there and then and maybe end the interview early. It didn’t work, they all smiled and nodded. I could tell they just told me what I wanted to hear, what they thought would get them the job.

Think this through. You’ve just been told that hours could change, with advance notice but still, calls could be cancelled at short notice, and that you will have to call in sick if you have so much as a cold and risk losing your pay. You’ve also just been told that part of your job will be to play bodyguard when an angry parent with a buggy wants to fight to the death for the wheelchair space, but understandably your potential employer won’t let up and sit by the doors because it’s a Wheelchair space. At what point do you want to have the conversation where you say you don’t think this job’s for you after all? In the interview where it dawns on you, or, say, afterwards when they hire you? After your first week? First month? After your pay is less than it should be because you had to call in sick to save your employer from catching it and suffering from it worse?

Private, independent employers looking for PAs aren’t going to go back to the jobcentre and complain about you. Not if you actually turn up. We’re too busy trying to seift through the unsuitable applicants that we’d much rather complain about (Female applicants only means Female Applicants Only, Local area means anything north of Southport is a ridiculous distance for you to be travelling) and deal with finding new applicants when the people we had hopes for didn’t turn up. Also, I think we’re all far too decent and understanding for it. We’re suffering under the same heartless bunch of scumbags. As you’re being forced to adhere to a heartless regime, we’re having our benefits and carepackages skimmed to the minimum and waiting to be forced under the same regime ourselves.

My last piece of advice is possibly the absolute most important one. You might like to write this one down so you remember it forever.

9) Do not get your potential employer’s phone number mixed up with your ex’s, and subsequently, absolutely do not leave threatening messages on their answering machines believing you’re leaving them for your ex. Best to just not leave threatening messages to anyone at all, really.

Admittedly I can’t prove it was them because they blocked their number, but I’m a big believer in Occam’s Razor, and I’ve got great voice recognition skills.

AFJ Replies: Able Bodied People Do not Learn What It’s Like To Play Sports With Disabilities

Wednesday 10 February, 2016

Champion News Paper Article from the 27th of January 2016 Headline reads Students learn what it's like to play sport with disabilities The article text is as follows Sixth form students from crosby got a taste of what it's like to compete in disabled sports after taking part in wheelchair basketball and blind football The group from Sacred Heart Sixth Form College wanted to find out more about how those with injuries or special conditions are able to take part in sports One student Poppy Law said Participating in the disabled sports day really educated me on how those with a disability struggle with daily life yet still have the determination to participate in sport I now have more admiration for those with a disability Another student David Brewis added I enjoyed the disabled sports day it really broadened my mind and taught me the challenges disabled athletes face It really made me think how easy it is for me to play sports so freely and easily

This is an article that was featured in The Champion, sefton’s free local newspaper, a couple of weeks ago. I’m going to address this article systematically. I wanted to go full outrage, but that would have involved an unhelpful graphic of loads of arrows pointing to the article, and big words, made in Word Art no less, saying “What is this ignorant BS!?!?!?!”.

But no. I’m calm, i’m collected and i’m ready to use my words to explain how wrong that whole thing is.

1) Holy Awkward headline, Batman! In the words of Dan from Sports Night, we’ve got all sorts of sentence construction here. Was the sport disabled in some way? Where the students? Was it the father all covered with cheese!?

I know what they meant. They meant Able bodied students learn what it’s like to play the sports that disabled people play. Here’s why their headline is wrong at the basic level.

2) These able bodied students did not learn what it’s like to play sport with a disability. They learnt what it’s like to play a “disabled sport”, whilst being able bodied. Was their mobility somehow temporarily compromised? Did they suddenly lose dexterity in their hands? Were they paralysed and given nerve damage and muscle loss or muted sensation?No? So they didn’t become disabled. They had all of the strength they already had, their mobility that they already had, their ability to reach, focus, sight? When you’re disabled, your body gives you obstacles, and disabled athletes learn to work with these obstacles or go around them.

Yes, it’s true, these perfectly able bodied students might find it a challenge to suddenly use different muscles, find it off setting to be at half the height they were. But these students? Not disabled. They did not learn what it’s like to play sport “with disabilities”.

3) “Special conditions”. Special? Okay, I went to a special needs school. I actually have no problem with the word “special” in relation to disabilities, but I take a very serious dislike to it’s use in the phrasing “special conditions”. Like, special conditions are conditions in a contract specific to a project under consideration that do not fall under any other conditions. They have used the word disabled many times in this article, it makes absolutely no sense on any level to use the phrase Special conditions there. I went to a special needs school, okay. Needs can be special, but unless someone’s been bitten by a radioactive spider and they turn into a hulk every time they’re hungry, there’s no such thing as “special condition” in this context.

4) I hate things like this. I always have, and I’m not the only one. It goes right up there with a person who once had a broken ankle which perfectly healed, telling me they understand how hard it is struggling with crutches because for 6 weeks they too used crutches. “Oh but don’t your arms get tired!”. Not after 3 years of being on crutches, love, no. (Bruised, is what they got).

And it’s right there with taking a wheelchair around a hotel to make sure it’s wheelchair accessible. A perfectly able bodied person who has good strength, grip, height, leverage decides, in a rickity old NHS wheelchair that they found on the corner of a canal, whether their hotel is somewhere someone who is 3 foot tall, in a heavy duty electric wheelchair, with osteogenesis imperfecta can comfortably stay for 5 nights. It happens with toilets too. Some team of able bodied so called experts decide what we need, and we’re left with doors too heavy for us to open, no space to manouver around in, no way to dry our hands after we wash them, because the advisors were a husband and wife team and the husband has decided he could hand the paper towells to his wife if she was ever in a wheelchair.

These people don’t learn about the disabled experience. These people are not disabled. If people want to know about the disabled experience, I’ve got the absolute best idea for them. For everyone. Come a little closer, It’s a trade secret.

You ready?

They should ASK US. We know. We’re literally the experts. I am sick of people playing disabled for a day, in this case a few hours, and thinking they suddenly know it all. They don’t. If people could just stop for a second and listen to us, we’d all get a lot more things done. I blame the tories.

I know I’m being harsh, these are just young minds, only just on the brink of adulthood. In that sweet age where they think they know better. (They don’t) They were, hopefully, just following the idea that came out of a ~feel good think tank~, where everything’s made up and the points don’t matter. These ideas belong in the Thick of It, thought out loud by Nicola Murray.

But it’s so patronising and condescending, and it’s why I hope a student hasn’t gone all Well Meaning Ideas on us and come up with it themselves. I mean, look, the student they interviewed first literally says they now admire disabled athletes more, because they ~understand~. It’s inspiration-porn-by-proxy at least. And why do people always have to experience things for themselves before they can understand anything? Where did empathy go? That was a good way to go about things. “I am not you, so I don’t know exactly what you’re going through, however I am human and therefore, I can empathise”. This is othering, it’s not helpful.

Admire an athlete for being an athlete. I don’t see anyone trying out a toned-down heptathlon like Jessica Ennis would and saying they have more admiration for athletes now, do you? Change disabled to woman and see where that gets you. Here’s an idea, try out black face in a bid to understand what it’s like being Black!

I just want people to stop thinking that they can ever have any real understanding of what it’s like to be disabled, when they live without any disability at all. Just because you have the option to use a lift does not mean you know what it’s like to depend on the existence of lifts to go from one floor to another. You do not have the same devastation when you are blocked out of using the lift because other people choose to use it en masse, you don’t face the same worry that one day you’ll be on the third floor of a building and be led into a back office because the fire alarms gone off and you can’t use the lift, and you can’t use the stairs. And I’m just scratching the surface, and I’m only focusing on the physical disability aspect. There are so many things that people just go around taking for granted. A day in a wheelchair isn’t going to fix that. There’s a known temporariness to it. There’s the novelty factor. In real life, it never ends, life long disabilities don’t just go away, and sometimes it all just gets you down. I miss how simple my life was when my only problem was bruised forearms from my crutches.

Here it’s sports games, but I have seen talk of teachers suggesting students hire wheelchairs for a day and try going about every day life for a week in a wheelchair, instead.

Don’t do that, that’s disruptive on all accounts. You will be taking a needed mobility aid from someone who might need to use it. You will be using accommodations saved for the convenience and assistance of disabled people, who already have very little accommodations available. You will be using our spaces and putting is out in a world that already puts us out enough. We’ve got able bodied people using the disabled toilet for selfies, and parents using the wheelchair space for their buggies. Nobody is clarevoyant, yet everyone has faith that nobody is going to roll up within the next ten minutes and need these things, and then they’re so surprised and angry at us when we turn up and need those things. We’re already in competition for that one wheelchair space, we don’t need anyone else making it harder.

Don’t do it. And whilst you’re listening, do me a favour, everybody. Go and watch that episode of Saved by the Bell, where Zack goes on a date with Melissa, a girl in a wheelchair, and they end up putting on a wheelchair basketball charity match. Take note of everything all of the regular characters do in that episode.

And then repeat these words “This is the most ignorant thing you can do. Don’t do it. Ever.” And then live by those words. Teach those words. Become one with those words.

This is AFJ, calm and collected as ever.

The Kindle vs Paper Books

Tuesday 26 January, 2016

A man I once believed was wise once said: “Books are no more threatened by Kindle than stairs by elevators.”

Talking directly, Stephen Fry is right. Correlation is not causation, Kindle won’t see the end of physical books just like we haven’t seen the end of stairs because “elevators” have been invented (from now on, I’ll be using the Britishism Lift instead).

But, his argument is flawed, because we still need stairs. You don’t make a building with a lift as the main trans-floor travel device, without a set of stairs, because out of the two, stairs are the safety feature, the reliable option. As far as most poeple are concerned, the lift is luxurious (even though it isn’t, because it’s bloody essential to wheelchair users and people with various disabilities, but, er, I dye grass).  A lift can get stuck, it can’t be used in an emergency, and it can use up a lot of electricity. As far as stairs go, as much as it pains me to admit it, in this world of multi-floored buildings, they’re the unquestionable necessity.

Now how about ebooks? Well, eBooks, specifically Kindle ebooks, are owned by Amazon. That’s a problem within itself because Amazon love being the centre of a monopoly. If we’re not careful, we might wake up one morning to find Wall-E’s Buy & Large is actually Amazon. We can all say there’ll still be a demand for the physical book, but there’s nothing to say Amazon won’t do it’s utmost to make getting the physical book very, very difficult.

But back to Stephen Fry’s Stairs comparison.

Books are physical things that are made by paper. In an environment-conscious world, we know that books = paper = trees = deforestation. There’s a whole ecological price we pay for books, there’s a whole oxygen issue. We’re nowhere near to replacing the trees we have lost over the last 30 years by today’s efforts of planting new trees.

The less trees there are to cut down, the more expensive the commodity, the more luxurious it is to have a physical book. Even recycling is not flawless, because with each journey through the process, the materials get more degraded. You will always need new material to put into the mix to keep any recycled product fit for purpose.

We as a society are also suffering from a space problem. As in, there isn’t any. Here in the UK specifically, new properties are being made to the bare minimum, materials for building houses are made at the bare minimum. The new wave of built houses to reach housing demand, as commissioned by governments and housing associations, have minimal floor space, minimal lighting and minimal storage. The materials the houses are built out of also cause a problem for shelving. (Ask me how I know!)

So, suddenly, not only are the demand for books environmentally unfriendly, but also you have nowhere to put your books once you’ve read them, if in fact you could find a comfortable place to read them in your new minimalistic home in the first place. Sounds like, to me, that the better option is to just get the books from the library, but, understandably, people do like to own things they enjoy, and also libraries are getting closed down across the country. (Thanks, Government!)

And then there’s the price. We’re just out of being stuck in a recession, people’s wages are still being spread thin, many people struggling to have money after their necessities, and disability benefits leave little room for the luxuries of a good book. Yes, there’s books in poundland, charity shops, second hand shops and carboot sales, but if there’s a book you want to read And Keep, and it’s new, your choices become somewhat limited on the high street when you’re strapped for cash. Why pay £14.99 for a paperback/hardback in WHSmiths, when you can buy an eBook for a portion of the price from the Kindle eStore? And there’s sales on every day for a variety of books. Plenty of authors have give away days. You don’t get that in Waterstones. Extra bonus: You also don’t need the shelf space! (Good news for social housing tennants, yay!)

More and more, eBooks sounds like the better option if you’re a reader. And although there are various ways of getting an eBook, Kindle have become synonymous with eBooks and e-readers. I don’t know about actual market statistics, but they seem to the Google of search engines. On the other hand, stories are not synonymous with paper. Stories can be transcribed into anywhere and on anything that people will read them. People seem to think that when people complain about Kindle killing off the physical book, they mean there’ll no more stories as well. But that’s not the case. There will always be authors, and they will always want to be published. And it just so happens that publishing an eBook yourself is a lot easier than going through a publishing house or funding your own self-publishing printing costs. So, they’re also a very good option if you’re an author.

And, just like the ratings market of television have skewed amazing television series into cancellation (*sobs* Firefly!), it’d be just as easy for the publishing market to say that there’s no demand for physical books and then cause the dry up the demand for physical books, driving us into this cycle where physical books are no longer wanted. I don’t know how ready publishing companies are for the digital revolution, but they’ll want profits, and it’ll be in their favour to jump on the bandwagon than risk losses by pretending the bandwagon doesn’t exist.

I know it sounds ludicrous, but let’s look at the technology market. Physical keyboards are being outmoded, and everyone’s going touchscreen. I look at phones, I look at computers, and yes, The kindle, and I have asked staff at shops “Where’s the keyboard? Why is everything now touchscreen?” and the response is: “Everyone wants touch screens these days”. I don’t, do I not count?

My point is stock management, industry, and some sort of higher being telling us what we’re meant to want. It’s easy for them to do it, and to make us little ants just go along with it, and then they say “People are buying this, this must be what they want!”.

I don’t want to see the end of physical books, though I am no longer able to read them myself, and I think they will live happily side by side with ebooks for quite some time, but I think it’s ignorant to think that it hasn’t had some effect on the physical books market and that it won’t ever (read: continue) to do so.

Or… Maybe Kindle won’t kill off the physical book, but many factors will continue to make the physical book the lesser-wanted option, and eBooks from their providers the more go-to option, and unlike the stairs, which are needed when a fire breaks out, physical pages are becoming less necessary.