They giveth and they taketh away

Monday 19 November, 2018

Hello all, hope you’re all well. It’s been a while since my last blog. But here I am again, to complain about something. As usual.

So, as I blogged previously at some point, a few years ago I bought a kindle. It’s a basic model, 5th Generation, and I believe that it’s the last version to have page turning buttons along the side on them. I bought it on sale at a time when the newer Paperwhite and touch screen versions were out.

That was in 2013, and five years on, my little kindle is getting, erm, sluggish. I don’t think it’s ready for the great recycling centre in the sky just yet, it’s only five years old after all, but I am getting the White Screen of Death sort of frequently, and even though the experimental browswer was put on there and never got further than basic searching, it now doesn’t work at all without crashing the kindle in to a White Screen of Death, making that feature completely unusable.

So I’m preparing myself to get a newer one at some point in the future, and here’s the problem. The newer ones don’t work for me. The Kindle basic 5th generation weighs 169g, and has buttons either side to turn the pages. Newer models are heavier and have no buttons, it’s all touch screen. I hold my kindle with one hand supported by a pillow, I can’t hold heavier models and if I can’t use the hand I’m holding the kindle with to turn the page, it won’t be any use to me at all.

To give a better comparison, even the latest ipad air 2, 32GB weighs 500g.

If and when my kindle does go on me, I really don’t know what I’ll do without it if the other devices are much of the same as we have today. And if goes sooner rather than later, it could even affect my degree. I put my text books on there and the tutorial hand out material too, so I can read along with the rest of the group as they read the paper handouts.  I don’t want to go back to struggling, but the Kindle solved the problems I had with reading, and if I can’t get something as good as it, I’ll be back to struggling.

For those of you who don’t know, I was fed up of struggling so much that I bought a mouse shaped device which had a camera where a rollerball on an old mouse would have been, called The Vision Booster, and the idea is you roll the mouse over the paper and read as you go… and it was terrible. There was a fisheye effect and you couldn’t read the inside margins, but you also couldn’t hover the mouse over the spine because then the words went blurry.

So, I have to know. Am I the only person affected by these changes with technology? Or are we, like the straw issue, the hidden minority who are forced to either adapt or be left out because we’re ignored in the drive for superior technical progress? Am I missing some really obvious solution


Plastic Straws vs other plastics

Thursday 12 July, 2018

I wrote a post just under a year ago saying that I was worried eco warriors would cause a blanket ban on straws, and so far at that point, there didn’t seem to be a good non-plastic alternative – not for me, and not for many disabled people. Hey, looks like I was right! And this has turned into an ongoing argument that has swept through social media. For everyone disabled person or carer saying why plastic straws are important, able bodied people will swan in and assume they know better, and will bestow their wisdom by making the same suggestions we’ve already point out won’t work, and shape the argument that we’re being stubburn. Disabled people could literally die without plastic straws, we have a right to be stubburn. This is a matter of life and death here, but it’s being reshaped as an inconvenience just because a straw to many people is a luxury.

Anyway, that’s not what i’m here to focus on today. A couple of years ago, whilst I was in Home Bargains, I suddenly became overwhelmed by the choice in shampoos and conditioners, and a member of staff shouted loudly from by the doorways (a good 10 feet away) to ask me if i was okay, because I was on my own, and at first I didn’t realise she was shouting at me. She saw me, sitting there by myself, looking at the variety available on the shelf, and made a show of me by shouting again to ask if someone was with me. For the record, I was fine, I was just looking whilst the person I was with was deciding between the toilet rolls, and she had no right to imply that I needed someone with me and that something was wrong if I didn’t.

It’s not the ableism that’s stuck with me since, it’s the fact that there are so many plastic bottles of shampoos and conditioners, and hand wash and body lotion and all matter of beauty products available on the shelf, in so many shops on the high street, in every town, in every city, all through the UK. How much plastic does that come to?

I was in Lidl this morning – They have a great deal on Wheetabix. 72 Biscuit bars for £3.99, when I was in Farmfoods the other day and they wanted £3.00 for 12! – and I spotted something. They now have a nut pick and mix area, which is exactly how it sounds. You can choose between a variety of nuts and put them in a bag provided. Nothing stops you from taking your own, but they provide a plastic bag like you get in the fruit aisle, and I have to wonder… could they not provide paper bags? I don’t know much about nuts, even though I quite like some of them, but they’re not very protected for freshness in the shop, so does a plastic bag really provide extra freshness that a paper bag wouldn’t once outside it?

Years ago my mum used to buy bars of soap such as Imperial Leather, Dove, Simple and Nivea, and they used to come in cardboard boxes. We then found places like poundland, and Home and Bargains, were selling liquid hand soap cheaper than the bars of soap and because of our tiny bathroom in our tiny house, it worked out better to have liquid soap nicely contained in a container than it did to have a bar of soap melting on the tiny ledge of the tiny sink. Now, because I’m aware of how much plastic I *need* that I can’t compromise on, I’m trying to cut down on things I can compromise on. Like the soap. But can I buy soap in cardboard boxes without the plastic wrapping? No. There’s nice soap caddies I would love to buy and use – unfortunately I still have to deal with a sink with no space for anything nice – but it’s got me thinking, where do you even buy liquid soap that doesn’t come in a 250ml plastic pump bottle? The re-usable caddy would be pointless. Shopping plastic free is difficult, it’s the infrastructure behind it, but it’s not life or death to replace the packaging soap come in, like it is for disabled people suffering through a straw ban.

Someone on twitter made a very decent point a couple of weeks ago. Disabled people need plastic straws to live, and in fact I’ve recently found out that they were invented for the purpose of disabled poeple to use, and disabled people simply wouldn’t be thriving as well today without them, but until someone invented the plastic credit and debit card, everyone was happy without them. They might have served a purpose originally, for security and fraud protection, but they are solely for convenience now. They get dropped, lost, forgotten, stolen, and cut up and put in the bin when they’re done with and replaced every 3 years even when they’re still in a condition to be used. In these days of mobile and internet banking, and paypal and direct transfers, we could easily mix the modern tech of today with the old tech of yesterday, with some innovative ideas to increase protection against fraud and theft, to eliminate credit and debit cards being used and thrown away.

Balloons are literally single use, they serve no real purpose and they end up in the ocean too. And how much plastic is put into our electronics? How much plastic is in the iPhone? Apple have a habit of making phones unusable to force people to upgrade to a newer model long before the tech has actually worn out, how many phones have ended up in landfills before their natural end?

It’s just infuriating me. Convenience for able bodied people is enshrined as “the way things are”,  but convenience for disabled people is too much for the rest of society, and actual life saving neccessities are shaped as conveniences when it comes to disabled poeple. Disabled campaigners are telling eco warriors that they will die without the simple plastic straw, and the response is not to be dramatic, or the fight isn’t against straws, it’s against the single use plastic, and then out come the same 5 suggestions again and again and again. I am tired of explaining that paper straws are no good, sillicone straws are no good, metal straws are no good, biodegradable plastic straws are no good, straw straws are no good. Yes I’ve heard some places do pasta straws, yes many disabled people don’t have carers which yes means they’re alone a large portion of the day. The worst are people patting themselves on the back whilst saying “we all need to make sacrifices”. Again, able bodied people who use them as a luxury is not equivalent to the “sacrifice” of dehydrating or aspirating through a lack of accessible options.

I only need to use straws intermittantly, but as the older I am getting, the more frequent those bouts are. But I am not fighting this for just my own benefit, I am fighting it for others and my friends who depend on them to live.

I will not be convinced that Strawgate is anything more than inflammatory self-congratulatory attempt to look good in the social climate, like a fad. Because until I look around shops and see some sort of dispensory service for shampoo and conditioner to be poured into non-plastic bottles, soaps back in cardboard boxes (or metal tins?), and a real cut down on plastic on the shelves on things that don’t really need plastic, right now it’s just coming across like Marie Antoinette telling the poor people they’re the cause of poverty by eating too much food.


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.


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.

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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


The Wheelchair Accessible Hy-Pee-Thetical Universical Supposition.

Sunday 28 June, 2015

Before you even ask: Yes, I did struggle with a title for this one. But let us go forth, regardless!

Feminism, which I’m sure you will agree, is a wonderful thing. Without feminism, we women wouldn’t have the vote. We wouldn’t even be allowed to wear trousers. The worth of a woman would still be dependent on, and used in, the property contracts between male family members and would-be husbands. We would, without a doubt, be passed between father to new-husband as nothing more than a valuable object to solidify an agreement.

So, yes, feminism is good. And it is needed. Sadly, oh how it is still needed…

And it is in that regard that I also say the fight for disabled rights is needed. Now, it feels, more than anything.

And here i will use a comparison to feminism to explain why:

Let’s say you were a woman (and if you’re already are a woman, please bear with me…) and that you lived in a world where everything was controlled by a credit card-esque pass key.

That card is what opens all doors, starts cars, pays for items, flushes toilets, sharpens your pencil at work, makes fold up seats unfold, everything. You name it, this card gives you access to it. In theory.

And let’s say there was a cited capacity as to how many women could get on a bus, work in workplace, learn in a classroom and sit in a cinema, to give a few examples. Now, let’s say, to get to the crux of my comparison, that in this futuristic alternative universe of a world, you needed to use the toilet.

In theory, you swipe it over the box, the light changes, the door opens, you’re good to go (if you’ll pardon the pun). But in this world, which is very much a Man’s world, there is one toilet to every five of a Man’s. And, even worse, men will use the women’s toilets if they feel the men’s queue is too long. After all, it was empty. And hey! They’ll only be a minute!

But oh no. You’re bursting for the loo! Your card won’t give you access to the men’s, there’s a man in the women’s! The queue is going down for the men’s, and you’re just stood there like a lemon. A lemon that really, really needs to pee.

You’ve argued to the local council about the lack of women’s toilets, but the only response was from a man who told you there wasn’t enough money for any more.

He says If you’d have called ahead, an attendant could have kept it free for you. But, who schedules their peeing times? Men don’t have to schedule their peeing times! Men can just go to the loo whenever they want (bodily requirements withstanding, of course). It’s hard enough to find a woman’s toilets in the first place, and sometimes the card scanner has been broken, sometimes they toilets have not been cleaned. Because men believe they’re hardly used anyway. You, understandably, don’t want men to use the only working clean toilet you can use.

You’ve argued with men over this time and time again. They say it was empty at the time, that there’s no sign saying that they can’t use the toilet. If the card works, then Men must be allowed to use it, right?

And as for being broken and lack of cleaning, you’re met with a shrug. Who can prove who was responsible for that? And scanners are expensive to replace, and it’s not the council’s fault the general public don’t treat the facilities right.

The bottom line is, Men don’t have to put up with any of that. And they have Five times the amount of toilets.

Most men, and some women, think that if you have that much of a problem with “being a woman”, maybe you’re just not cut out for this world. Some even think that maybe you should just undergo a “sex change”.

Except in this hypothetical world, it wouldn’t be called a sex change, it’d be called a “sex correction”.

As in, the problem lies with you for being a woman, not with society and it’s attitude to women. In their men’s minds, it’s not how they treat you that’s wrong, it’s the fact you exist in the first place. So they will help you fix the problem and turn you into a man. Then you’ll be free to get the bus anytime you like, you don’t have to ask someone to open the door for you when you enter a shop, and even better you can pretty much go anywhere you like! Your card can work everywhere! What’s not to like about that?

Because of course, you’ve spent your life complaining about those things! Trains stop letting women on them passed ten o clock at night, because there’s no attendant on the station to let them through the men only doorways. Some shops won’t even sell to you unless you have a man present at the point of sale!

Instead of agreeing that these things are easy to change, that these shops could just remove or disable the card activated doorways, everywhere says it would cost too much money. Some of those doorways have been up for 200 years! They’re part of history. How selfish are you that you want to destroy a relic of history just to get home at night?
Yes, it’s a shame that you can’t use the train past ten or clock, but that’s what taxis are for. Besides, nobody else has complained! All the other women are home before 10 o’clock. The male station manager can’t conceive why a woman would even be out past ten o clock, anyway. Don’t women get tired easier and have to go to bed earlier?

So, it’s just so much easier if you became a man.

And then you can go the toilet and travel on the train whenever you like!

But of course, you don’t want to become a man. You want the world to accept you as you are. A woman. You don’t need to be fixed and corrected. You certainly don’t need the government’s suggestion that you undergo the therapy and operation to become a so called respectable member of society, or their awfully high fines for “acts of uncooperation”.

It’s society that needs to change, accept and adapt.

If society got rid of those doors and the card system, nobody would need to employ anyone extra to open the ancient Men Only doorways whenever a woman wishes to use the same service. It’s society that needs to stop saying “but this is how it’s always been”.

That alternative universe’s society clearly isn’t working. Not for the women. Just like our society is failing the disabled.
Every time we get something, after fighting and fighting, the ignorant majority think they are well within their rights to use it. Like disabled toilets and changing rooms and bus spaces.

And the reason is always “nobody was using it at the time”.

But that lies on the assumption that, like the men in that alternative universe think, nobody Will need it. The majority of able-bodied people assume, just like those men assume about the women, disabled people are so few and far between that you’re not actually going to inconvenience anyone, and if you did, it’s not that big of an inconvenience. Except that’s blatantly not true. If able bodied people registered the amount of times their misuse of disabled facilities actually inconvenienced disabled people, and how much of a negative impact that inconvenience was, just like us disabled people do, you’d (hopefully) find the regularity shocking.

There is an attitude in this world that if disabled people just underwent the right surgery, more physio, see better doctors, did this, did that, they wouldn’t live such difficult lives. Instead of accepting that disabled people exist and require equality, this society says THIS is our society and, although sympathetic to the plight, why change something when it’s needed less than the way it already is?

And as for the Listed buildings problem, which is a time honoured excuse for not even bothering with adaptations; I say this as a fan of history, does anyone think that our ancestors, who gave us language, paper, everything that came out of the industrial revolution, vaccinations, medications, democracy, would want our progress stagnated for the sake of what is an over appreciation for what has been?

There are ways to preserve things, and there are ways to adapt. These things are not mutually exclusive. I will give you an example.

I live in Liverpool, and we have The Albert Dock. Most of the Albert Dock is paved with cobblestone, and it’s absolute murder on my back. I have friends who have it worse, some not even in wheelchairs. When I asked why they couldn’t be changed, being such a health hazard, I was told that actually, the cobblestones are part of the Listed/Graded system. They are a piece of history. They are to be preserved for as long as possible. I’m not  exactly sure how that’s going to work with people walking and rolling and driving and whatever else-ing over them, but either way, the cobblestones are there to stay. For the sake of history!

And fair enough, they are a wonderful, beautiful piece of history.

But why then, can’t textured/griplined but mostly see-through plexiglass or similar covering go over them? It would serve two purposes:

  1. Assist in preserving them longer by protecting them from being walked on
  2. Give a much needed smoother service for wheelchair users like myself

I didn’t hear back from my suggestion. I have a horrible feeling they looked at my suggestion in horror and threw it straight into a fire, like the satan-worshipper they no doubt assume me to be, because nobody good and pure could possibly suggest such a thing! Cover the cobblestones with plexiglass!? How DARE I.

Society needs to stop feeling like it will lose something in return for including a large part of our society. It needs to stop seeing adapting things as a waste of time and money.

I am disabled, and whether you believe it or not, I am here to live, just like everyone else. And like many other disabled people, I will get on the train, I will go into shops, and yes, on the odd occasion, I will need the loo.

Don’t be like those Men in the Alternative Universe. Have respect, not only for the people who might potentially share your day, but also for the people who fought so hard to get the minimum we’re clinging on to. Nipping in the disabled loo for your own convenience isn’t just some sort of backwards bid for equal rights, it’s shitting on the disabled campaigners of the past who actually gave us those disabled toilets in the first place.
And, for anyone who might point out this sad fact, I am aware that what happens in my hypothetical alternative universe is a lot like how women are treated in some countries and communities today. All I can say to that is, let’s not go down a route of heirarchy here. My whole entire point is that injustices against women and injustices against disabled people are BOTH injustices that we have to fight against.


Return of the AFJ

Saturday 20 June, 2015

I know. I know.

I fell down the rabbit hole and didn’t come back up. I’ve probably lost all the readers I managed to gain (those faithful two!), and I’m probably, yet again, talking into the big ether of the ethernet.

I know I’ve said this a few times already, but I moved in 2013, and when I moved I lost a lot of access to my laptop, and then the laptop I had burnt out by way of the motherboard, and the circumstances that followed made it even more difficult for me to update.

In plain english: I lost access to my desk and then I lost the ability to use my laptop on my knee for even limited times. I read a lot on my computer and I manage to type for short bursts, but regular updates need regular typing, and that was shot.

My inability to use my laptop for as many hours as needed even interferes with the Uni work that I swore I’d never do again. (But my brain was rotting and I was desperate.)

But I am back now, and with a bit of hope and luck, I’ll even manage to update infrequently!

To get us started, I’m going to tell you something that has made a nice improvement on my life over the last couple of years. Do you remember this post? I explained about the problems I was having with reading, and how e-reader tablets are the new go-to suggestion. I left out my main reason for not getting a kindle, besides the cost of re-purchasing all of the books I already own, and that was the same inability to hold a book in front of my face also applied to holding kindles too.

Well… As well as the device I mentioned in that post, I also suddenly remembered a device another friend used way back when in my special needs school. It was a magnifying document reader, and it looked a bit like a sewing machine with a tv screen through the side of the top bit  (Describing technology is not my strong suit). Books or sheets were placed on the board like you would put fabric through a sewing machine, and through mirrors, magnifiers and lighting, the television screen part would show the book or the work sheet, blown up to the magnification that you could control with a dial.

It wasn’t perfect, it was it’s own desk that left you no room to write on, and you had to look up to the screen because the the gap between the board and the screen was that big, and the screen itself was also pretty big. But remembering that device got me thinking.

I have read books on my computer. I’d already downloaded some PDF versions of books, but the idea of going through the efforts of finding a PDF version of every book I already owned without breaking the law was off putting. So the solution: Try and find a way to get my books from my shelves, On to my computer.

That’s how I found The Vision Booster Magnifier!

Excellent! Right?

Wrong!

The Vision Booster Magnifier is a device, in the shape of a computer mouse, that is meant to allow you to read documents in your hand (or on a desk or your lap etc), on the computer screen. It uses a little camera inside the body, where the rollerball would be on a normal computer mouse, to send the image it sees to the program you install, and you can live-read like normal.

Here’s the problem. It’s the shape of a computer mouse and is far too big for your average book, so you miss the last words of the line because it hits the margin. Also, as you can see in the image below, the words on the edge of the camera’s view are warped. That’s holding the camera still, if you move it too fast, the whole view you have goes blurry.

  vlcsnap-2012-10-12-15h51m59s234

(Excerpt from McFly’s Unsaid Things)

The image also shows how the last words of the line can’t be read, because of the aforementioned margin problem. So you can’t read words near the margins, and you can’t hover the mouse over those words next to the margins, because they come out of focus, and you end up reading along to books very slowly to keep words readable. I’m not the fastest reader, I know, but this left me feeling like I was five years old, sounding my words out again. It doesn’t make for any sort of enjoyable reading at all.

Also, not that it really matters, but the plastic of the mouse felt light, cheap and as if it would degrade to nothing in the future.

So it was neither use nor ornament, and an all around waste of £19.99.

I do, and did at the time of purchase, know about the pen reader: A device that is pen shaped with a camera at the tip, that you use in much the same way as the mouse, with the added bonus of actually being able to read the end, or the beginning, of the line. Think of something like what they use in Dictionary Corner on Countdown. However, at the time of purchasing The Vision Booster Magnifier, the pen was almost £300. Very much out of my budget!

Another suggestion floating around the internet is to try a page scanner. This device, if I remember correctly, was intended to be used as a portable replacement for a big bulky 3in1 printer/scanner/photocopier, and the suggestion was using it in not quite the way it’s intended to be. You just hold the scanning plate above the book (or a document, whichever), run the software, and you use the live preview setting to read the page. It’s intended purpose is to capture the screen, which is why I used the phrase “Live-reading” above.

My problems with that was this: The device had to be held up at a certain distance from the page otherwise it would be blurry, and I can’t really hold anything up for a long time without my arms being supported. I also couldn’t imagine being able to hold it properly for the time needed to read the page, without looking down at it whilst holding it, and to me it defeats the object somewhat if you’re trying to read the pages on the screen when you keep having to look back at the device and the book. I also couldn’t find any reputable sights that sold it, and most seemed to be imported.

Then the popularity of portable page scanners fell, I don’t think they were working as well as people expected them to, so the fleeting idea was also thrown out of the window.

Here’s the funny thing. A couple of months after I moved, my neck’s quality of existing took a bit of a dip and it changed a fair bit of the way I could sit, and that actually allowed me to be able to, using armrests and/or pillows to support my arms, hold very light things directly in front of my face for me to read them again. It’s also how I knit.

So, low and behold, I bought a kindle! The very basic one, with e-ink display, and without a keyboard and backlight. It doesn’t solve the problem of re-reading the books that I already have in my possession, but it did finally allow me to get back into reading. Which has been nice. When everything else around me has fallen apart just a bit more, I at least have reading back.

For the times when I can’t even read on my kindle, or my concentration’s shot and words are going in one eye and out the other, or I just want to do one thing whilst also doing another (knitting, usually), I listen to Audiobooks.

So, ultimately, I take back all of my misgivings about The Kindle (other e-readers are available). It’s been a lifesaver. I’m currently working my way through some of the classics, and the Wizard of Oz series, so watch this space for some book reviews!

Thank for you for reading. I will be back soon.

-A Failed Journalist.


Beware the man in the wheelchair with worn out shoes

Thursday 8 May, 2014

I keep seeing that phrase thrown around twitter, and it really winds me up. I’ve seen various versions of it as well, each more offensive than the next. Sometimes it’s aimed at fictional characters on telly, disabled characters played by able-bodied actors, and sometimes it’s aimed at wheelchair users who don’t always depend on a wheelchair. There’s sexist versions, homophobic versions, racist versions. The ignorance in this one ignorant comment is horrific and worrying, quite frankly.

No matter how it’s said or who it’s aimed it, it doesn’t matter, it’s a saying that needs to stop. It’s offensive and it’s incorrect. It comes from the belief that every wheelchair user is always in a wheelchair, and it further perpetuates the belief that if you use a wheelchair and are then seen standing up or walking, you are faking, lying and downright untrustworthy.

Honestly, disability is not that plain and simple. Yeah, able-bodied actors playing disabled characters annoy me, because there are plenty of disabled actors out there, who maybe could add a bit of insight to the role, and they don’t get a look in. Why? I’ve never heard of one decent reason yet. But, the way people point out able-bodied people’s portrayal of disabled characters because they happen to see legs moving, feet tapping, is also wrong.

Not all forms of paralyses mean that a person can’t moved affected limbs completely, it also doesn’t mean that the affected limbs are numb to sensations, and it goes without saying that not all wheelchair users are in a wheelchair because they’re paralysed, and not all wheelchair users are wheelchair dependent. Here’s an interesting fact: Some people use wheelchairs because other parts than their legs don’t work! Their legs might be fine and functional, but it’s their backs that don’t work, they might have a heart condition, they might have chronic fatique syndrome. Even some severe forms of tourettes can affect a person’s mobility so much that they need to depend on a wheelchair.

And, for those of us who consider ourselves wheelchair dependent, it still doesn’t mean we’re in our wheelchairs all day, every day. How do you think some people get into their wheelchairs? Magical bubbles lifting us from our beds into our chairs? I use crutchers, some of my friends side transfer, some use a hoist.

All variety of disabilities and mobility aids have their own ways of wreaking havoc on shoes. Don’t believe me? Have a look at these!

my pair of old grubby trainers
These are my shoes, and they’ve been my shoes since 2009. I couldn’t get a decent photo of the tread underneath, but the worst looking shoe from the top is also the most worn out shoe from underneath.

If you’re not the type to think it’s proof of a lack disability, you’d probably think that that’s the shoe for my good leg, and maybe even that it’s all wrecked from having to put my best foot forward everytime I walk. Ahhh, if only I actually had a best foot to put forward! It’s more like not-as-dead-as-my-other-leg!foot Vs the-actual-dead-leg!foot.

Some people who understand the complexity of mobility issues might even assume that it’s all marked at the side from me crossing one leg over the other, or maybe tapping my leg against my chair or crutchers, or maybe even standing on the sides of my feet.

Well, you or that person would be wrong. Cos the worst shoe actually belongs to the foot of the leg that hardly ever moves. The whole leg is practically a dead weight, it catches on the underside of my footplate when I’m lifting it up onto the footplate, it’s constantly rubbing against the holding bar of the footplate as I merrily go along my day. It’s the foot that lands heavily on the ground, I’ve never lifted my feet properly but my knees are now buckled since my hip operation and I’m sure that has made my weight bearing even worse, from a functional viewpoint, so the underside of my shoe takes a bit of a beating.

I’ve seen shoes of the friends who use hoists, and their shoes end up in much the same state, and usually a lot quicker. I’ve seen the treads of the friends who side transfer, and the tread is always worn down, marked, marred or bobbled on the side of the shoes that hit the footplate bar. Same goes for those who use platform footrests and the metal holders.

Honestly, any comments like that are so… stupid and offensive! I can’t even believe people say it. I’ve had these shoes for 5 years, and yeah they’re the longest lasting pair of shoes I’ve had, but look at the state of them! Look at the left shoe! You can’t see it from this angle, but a small bit of stitching has come undone by the heel, it’s only because I don’t walk that that those shoes are still holding together. I imagine if I started miraculously walking everywhere tomorrow, I wouldn’t get very far before the stitching undoes completely and the heel starts coming apart.

Please, next time anyone says it, tell them how wrong they are. Or better yet, point their ignorant faces in this direction. If they want to carry on believing wheelchair users have perfect, pristine, unmarked, unworn shoes, they’ll have to keep me and every other wheelchair user in supply of new shoes every few months!

Oh, that’d be too expensive for them? Well, then they’ll just have to learn and accept the diversity of disability then, won’t they?