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,

-AFJ-


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 in the 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.


A Failed Book Review: Handle With Care

Tuesday 12 January, 2016

Content Warning: This review mentions and in some cases goes into depth about eating disorders, self harm and rape. If these topics are upsetting or triggering to you, please stop here and either navigate to another post by the links on the right hand side, or exit the blog via your back button. A new post will be up in 2 week’s time and will replace this post as being the first to read should you wish to return.

Thank you very much and apologies for any inconvenience. If you’d like to contact me for any reason, please use the comments on this page to do so.

 

Handle With Care.

Handle with Care was published in 2009 and was written by the famous My Sister’s Keeper Author, Jodi Picoult. This novel, Handle with Care, is hard to describe and it’s only today that I realised why. This novel is meant to be about the difficult life of a young girl, called Willow, who was born with Osteogenesis Imperfecta Type 3 (Brittle Bones Disease), and how her parents are coping with having a disabled daughter (her sister: a disabled, younger sister). What this story is, like what any other story is when it concerns a disabled person, is more about how everyone around this disabled character deals with the disabled person’s existence (in this case Willow), and how their existence impacts on their own lives. This book is not so much about Willow, but those characters in the peripheral of Willow’s life. She is, arguably, both the main character and the most minor character in the book.

The main character, I would say, is her Mother, Charlotte, who tries to show that she cares the most about Willow, by suing the Ob/Gyn for wrongful birth.

And here’s some context as to why I read this book:

I hadn’t read Jodi Picoult before and I didn’t know all that much about My Sister’s Keeper. I knew the film was “a weepy”, and I tend to avoid those, so I didn’t know it was a book nor did I know the author’s name. But this book, Handle with Care, was recommended to me by my the mum of my friend, Laura.

My friend Laura, for those who don’t know, had Osteogenesis Imperfecta Type 3. Actually, according to her specialist, she had one of the most severest cases of it he’d ever seen. Unfortunately, after a serious bout of sickness related to her condition, she passed away back in October 2005, aged 20. It was with personal interest in mind that her Mum read the book, and then recommended it to me some years later. In her words, “Just so much of it’s like Laura”.

So, with high expectations but the understanding that any knowledge I had of OI, and the treatment of it, was second hand and might very well be outdated by now, I started reading. And for a good two thirds of it, I couldn’t put it down.
The story itself is pretty easy to follow, despite story switching POV between multiple characters, and random recipes and misplaced narrative throughout the book. Charlotte had her first daughter Amelia, then she married Sean O’Keefe and had her second daughter, Willow. Charlotte was best friends with Ob/Gyn Piper Reese, who became her and Sean’s go to doctor when they had trouble conceiving, and when their friendship somehow survived through all of that awkwardness and then some, she took on the natal care of Charlotte.

By the time Willow is five, which is when the novel really starts, where the real introduction to Willow happens, the O’keefe’s have mounting medical bills, money problems, a frustrated pre-teen daughter, and a super intelligent, intuitive younger disabled daughter who is being held back by her mobility problems and America’s general lack of understanding of severe disability.

I’m going to take this moment to say that I didn’t realise wheelchair services were so bad in America. Unless Picoult has used some artistic licence, I didn’t know that children had to wait so long between fittings for a suitable wheelchair. We’re not much better in the UK, especially now in the age of the post code lottery, but at least the wheelchairs are free, they tend to try and get things right, they’ve always provided children with chairs you can sort of adjust around their growth, and charities do always help where they can. Leaving a child of five to sit uncomfortable in a chair they got fitted in when they were a toddler, especially if it can be dangerous to their health and safety, would have been unheard of (until about 2010, when the wheelchair services all had their fundings cut. But that’s a post for another day!)

Back to the Book. This is when it starts to get a bit complicated, but I’m going to try and simplify it as much as possible. The O’keefe’s go to Disneyworld and Willow suffers from a bad fall (as is the unfortunate nature of Brittle Bones Disease) and both her thigh bones end up broken. The doctors at the local hospital check it over, but because the medical letter that explains Willow’s condition was accidentally left at home, they mis-read all of Willow’s breaks as abuse, and both Sean and Charlotte end up being arrested. Amelia ends up in guardian home for the night, under child protective custody, and poor Willow ends up in hospital, alone, in a spica cast.

Curiosity drove me forward in reading, but even at this early stage I was sitting there wondering how realistic this would be.

Knowledgewise, I was questioning whether it would be really possible for a child with OI type 3 to be put in a spica cast. I was put in a Spica cast following corrective surgeries on my legs when I was five, they’re not the easiest things to live with; And Laura couldn’t have any casts of any type put on her, ever, because they were more of a danger to her than helpful. They were so heavy, they would have caused breaks either side of the cast. And, a Spica cast can go almost all the way up to the chest, just one bump or wrong turn could have meant the spica cast digging the wrong way into a rib. I was left wondering if maybe things had progressed so much that this wasn’t actually a fatal risk anymore. I welcome comments to inform me either way!

Similarly, besides the bouts in her wheelchair, Willow could walk. If medical treatment and medication has come on leaps and bounds since Laura was a child, I’m happy to hear it, but you hardly ever heard of someone with OI Type 3 walking, even into the late 90s. I’m aware a friend of Laura’s could walk with crutchers, but he was a lot bigger than she was so I don’t think he had type 3. What many people with OI decide to do, is to have steel rods inserted into their long bones, so that their legs can bare weight. That was never an option for Laura, her bones wouldn’t have accepted the rods.

And talking of size… It has happened that the less severe forms of OI has been misdiagnosed as severe abuse, and probably does continue to happen. Because you’re looking at someone just a bit outside of the averages of height, weight, proportions and mobility. But with OI type 3, the person is very small. They have certain, unmistakable attributes to their physical appearance. I can understand these factors being overlooked twenty-five years ago, especially in a very young child up to toddler age, but it wouldn’t have taken them more than two seconds to see Willow’s body differed from that of an average child: Her body being a certain shape, the length of legs and arms not being in proportion to her torso or head, the whites of her eyes possibly being a blue-tinted colour, and a voice at a higher pitch than normal you’d find even on an able bodied child. With some conditions, you might not know what it is you’re being faced with, but you certainly know that, skeletally speaking, you’re looking at someone atypical. A child, yes, but an atypical child in physical appearance. Abuse wouldn’t explain low levels bone density or unusual calcium markers in the blood, and I would expect doctors, especially within the last decade, to check into these things before throwing the A word around.

It was one of many occurrences I found that Picoult depended on the sheer ignorance characters and readers alike to carry the plot along. (But hey, how else would the story drive forwards?)

Anyway, in the plot, once everything is sorted out and everyone’s released and free to go home, that leads to the O’keefes trying to sue  everyone involved in the events that lead to the mistreatment of the family. The lawyer says that’s a no go, but they should consider sueing the Ob/Gyn for wrongful birth. That is to say, sue the doctor overseeing Charlotte’s pregnancy for not figuring out that Willow had OI in time to give Charlotte the option to abort.

In other more specific words, blame and sue Piper for not giving her the option to abort Willow. Despite the fact that they’re catholics, abortion was never going to be an option as agreed by both Sean and Charlotte, and a late term abortion was in fact offered to and subsequently turned down by Charlotte.

Amelia develops bulimia, the sisterly relationship between the two daughters breaks even further, and eventually Charlotte’s drive to carry through with her plan causes a rift in her and Sean’s marriage.

 

It’s a very full on story, and the further long I read, the less sympathy I had for Charlotte. She didn’t see what she was doing to her family. Or she did, but she didn’t care. There was one bit where, because Piper’s husband is the small town Dentist, Amelia misses her appointments, because Charlotte refuses to take her, even though she was due to have her braces removed. That’s just cruel.

Willow was intelligent enough to pick up on what was going on, and there’s just no nice way to say “if I’d have aborted you, we wouldn’t be in so much debt” to a young child. There’s also no nice way to say “I do love you, but I didn’t ask for this and someone has to take the blame for that.”

Then there was the convention. Charlotte is confronted by a bunch of mothers who read about the court case in the news. Charlotte is actually angry for being confronted. Charlotte really doesn’t understand how lucky she has it, in comparison to other people. Meanwhile, Amelia’s wandering around the hotel the convention’s held in, pretending to have a lesser form of OI, and she picks up a boyfriend along the way.

Those are the parts I’d say that were written well, even if on the surface I didn’t particularly enjoy the plot. However, intermixed with these parts were really poor writing and plot devices that made me think Picoult’s editor had set a holiday response for their email saying “Whatever you’ve written, I’m sure it’s perfect! We’ll publish it in when I’m back!”

We’ve got the part where, following the removal of Spica Cast, Willow needs to exercise. How does an over protective mother encourage her reception aged daughter, who has a condition where just one fall can kill her, to exercise? She makes her to walk the end of the driveway, by herself, to collect the post (admittedly something she likes doing but still…) where any dubious adult could just come along, sweep her up and run off with her. The route to the mail box at the end of the driveway involves going past a pond that Willow has an attachment to, and not the adult logic of risk assessment. Between any of these points, she could fall and die, if not be abducted by the aforementioned dubious adult.

Holy Brain Fart, Batman!

(I later realised this was a Chekov’s Gun situation, but I’ll get back to that later.)

At one point Sean and Charlotte talk about Willow’s future, and I cringed at the ignorance. It’s very realistic for parents to suddenly realise what the future holds for a disabled offspring, but it’s very undermining to the plot when you have a character (in this case Sean) who are portraying themselves as masters of their daughter’s care, victims in the eyes of the law, prepared to do all that is needed to make sure their daughter’s life is lived as equally as possible… being disparaging about any aids she may need in the future. If it’s meant to add depth to the character, it doesn’t. It wreaks of short sightedness and narrowmindedness.

Then we’ve got the “let’s throw this in/blink if you miss it” rape. Yeah. Rape. Sean and Charlotte have a break in their relationship, and then from the point of view of Sean, they have awful sex that Charlotte didn’t want, where Sean’s main goal is making her hurt as much as her actions have hurt him. Deliberate hurtful sex without enthusiastic consent? That sounds like rape to me.

Then there’s the part where Willow selfs harms because she’s seen Amelia do it to herself. I’d say that this was the point where it felt like Picoult was dragging it passed the point where she should have ended the book. This didn’t just feel like a red herring, it felt tired. It felt like a way to allow the author to point to the book and say “No, see! It really IS about Willow!”, instead of having Willow be this sort of phantom main character that the story is meant to be about, but really isn’t.

There is also a conversation after Willow is hospitalised for self harming between Piper and Sean, because Piper is the only reasonable person in this book. She (rightfully) suspects that Amelia is self harming and suffering from bulimia, and thinks (knows) that’s where Willow “learnt” how to hurt herself. What does Charlotte do when Sean mentions that his information come from Piper? She has a go at him for talking to Piper, talking to the “enemy”. She’s got one daughter in the hospital, and another daughter suffering from serious emotional distress that has manifested into self harm and an eating disorder. But all she cares about is the case.

There’s the whole side plot involving the lawyer, Marin, who doesn’t like the case, because she was an unwanted child herself. I’m not sure what she really added to the story, but things got very contrived when one of the jurors turned out to be her birth mother. What are the actual chances?!

And then, the main big problem I had with the book. The ending.

Willow, once again, is a child who could die from a sneeze (No exaggeration, sneezes can break ribs, ribs can pierce lungs), and yet she is allowed to go outside, by herself, to look for Amelia. It’s cold, slippery winter weather. There’s that pond that she can’t resist going near, which her mother knows. And Yet! The over protective parent allows her to go, by herself, despite ALL of these dangers. Despite the long arsed court case that she’d just won, by saying how much she looks after her severely disabled daughter.

And what happens? Willow goes to the pond, the ice breaks suddenly, and she falls through into the freezing cold water and dies.

The epilogue involves a brief update on everyone. Sean and Charlotte are back together, Amelia’s in therapy, Charlotte placed the cheque she got from winning the case in the coffin with Willow, and Piper moves away and is never heard of again.

I was left so disappointed by the whole ending. Not because of the understandable “After all that!?” feeling I was left with, but because… I suppose, because there were more realistic ways for a person with OI to die, and Picoult chose that one!?

I went from wondering whether a child with OI Type 3 these days could actually walk, to wondering what sort of brain fart do you have to have to let your child, who could fall and die by slipping on ice (as any child could, but this is more so), go out by herself in icy weather?! You can only consider it in character because of the same brain fart earlier on, (Chekov’s brain fart alert!) and although it must have been planned out due to the previous incident of letting Willow out to the end of the drive and going missing by the pond, it just reads as a quick solution to bring about the end of the story.

There are natural complications with OI that a person can die of.

There are the usual risks anyone has in daily life where the risk of dying is increased due to the nature of the condition. For example, one day, Laura, aged 4 or abouts, was spinning happily around in a circle, in her wheelchair, and Almost cracked her head on the edge of a piano. She didn’t, luckily, but the point is, it could have happened and the outcome would have been devastating. An able-bodied child would probably just give themselves a concussion.

It feels, for the lack of a better word, disrespectful.

And then Piper… Piper just moves away!? I think that was another point of contention for me. It was written in a half unbiased, half sympathetic style directed at Charlotte, as if we should all see it her way. It was all very pragmatic towards Piper, a sort of “Well, what can you do? Someone has to answer for this child being disabled” attitude about it. There wasn’t much sympathy at all for a woman who not only did not cause Willow’s disability, by action or inaction, but also did everything right by the whole family, and still had her career ruined for it.

I’ve missed a lot of out, half because I can’t remember it, and half because I couldn’t be bothered going into those bits. There is so much to this story, from so many different points of views, it’s just difficult to go over.

I’ll give credit where credit’s due (although again, I wonder if this was from lack of research on Picoult’s part and not really through a deep understanding of disability), there was one good thing that came through over all. Many people don’t understand that disability can be a spectrum, and that mobility can and does change from day to day for many people. Sometimes there is a conscious choice involved over what “part” of your disability you have to consider most important, and allow the rest of yourself to suffer the fall out. For example, having to walk because a problem with your upper body doesn’t allow you to self propel, and then dealing with the pain in your legs from walking, which is the lesser of two evils in this scenario.

In this book, there is an understanding that when Willow’s health is best, she can walk and only needs her wheelchair for safety and speed. She also has a walker and other aids for bad days and an array of things for the worst days. Many people think that if you’re a wheelchair user, that’s it, you can’t walk. Nobody says to Willow’s parents, “Well, she could walk yesterday”, nobody asks why she doesn’t use walking aids all the time. It’s just understood she uses whatever she needs, whenever she needs to. That’s so unaccepted in today’s society that people have actually become afraid to stand up, lest they get abuse for it.

People who deal with fluctuating conditions are at least experienced in preparing for the worst but knowing that’s not always the case so do what they can on their good days. There needs to be more of that shown across all medias.

Although, preferably with accuracy and research, and not a research fail, which is what I suspect is the case here.

The remaining issue is: Was Willow like Laura?

Well, yes and no. Laura was a lot like Willow when she was that age. But, a lot of disabled children are, just like a lot of able boded children are similar. There’s just this amazing phenomenon where physically disabled children develop brilliant personalities that differ from their able bodied peers, and some are quick witted. In the book, it’s explained that children who can’t learn through physical play find solace in books and television, and they become intelligent because there’s this thirst to do everything and know everything, and if all they can do is read and watch television instead of, I dunno, play football and poke things, then they will quench that thirst with good interesting books and documentaries. And Laura did have a high reading age for her age and was interested in a lot of things. But Laura also did accessible sports, so, you know, same outcome, different processes.

Mostly, they just shared experiences. I may have been the one with the Spica cast, but Laura was the one going to hospital every few months and spending three days tied to an IV pump of pomedrominate (before they switched to tablets for Laura). Laura did have to go on holiday with letters from doctors, to prove she was fit to fly, to prove that her Mum knew what she was doing. Laura had fun getting fitted for a wheelchair in a way that the O’keefe’s were only aware of. She was mistaken more than once for a baby. Even at the age of 18, she had people mistaking her for a toddler, and sometimes her and her mum couldn’t tell if people were speaking down to her because they’d mistaken her for a child, or because of a terrible attitude towards disabled people (again, different process, same outcome). There’s only so many ways you can react to these life situations, and maybe that’s what feels so familiar.

But that stops, the characters all become their own beings… and it stops being an enjoyable read.

I gave this book a 2.5/5


Five Years Old!

Sunday 22 November, 2015

Happy Birthday To This Here Blog
Happy Birthday To This Here Blog
Happy Birthday To I Once Was a Twenty-Something Journalism Student!
Happy Birthday To This Here Blooooog

AFJ5

This Here Blog is now five years old, and boy have we gone through the ringer! We’ve had stops and starts, we’ve had poorly written blogs and entries that were written three years ago. I’ve had increasing health problems, and you’ve never been here before. I once had a desk, now I don’t.

But somehow, here we are, at five years. Please, do applause.

In those five years we’ve had asexuality posts, access fail posts, music reviews, film reviews, book reviews. I’ve whined, I’ve moaned, I’ve ranted, I’ve lamented, I’ve praised, I’ve prided and I’ve lost where I was going. I lost a few friends, and I gained a niche. And god knows how many times I’ve repeated myself.

But no matter what failed, no matter what ailed, despite the fact that I’m still not using a desk, here I am. Here is AFJ, The Once Twenty-Something Journalism Student.

When I started this blog, I’ll be honest, I had no idea what I was doing, I just knew that I still had that thing that made me want to be a journalist. Basically I had a drive that made me want share my opinions and point out the bleeding obvious, in a way that made people say “Well, I don’t agree with her, but she sounds like she knows what she’s talking about.”

And from the ashes of my film review blog, from the dregs of my Fun and Friend website, from the little annoying floating rib that hurts on humid nights, came this here blog.

And this is where I am, and this is where I’ll stay.

I will not be moved.

Thank you for being along for the ride. Even if I only have one reader and this is the first post you’ve read. Stay a while, have some imaginary cake!