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


An Open Letter To The Majority of Shops

Saturday 14 November, 2015

Dear Almost Every Shop,

I am a twenty-something year old adult. I’ve been in charge of my own money since I was ten, I’ve understood the value of money since I was even younger. I would really like it if I was afforded the respect I deserve in being allowed to handle my own money

I understand that shops are just designed the way they are, and that a majority of people see no fault with it, so nobody feels like they need to change that. After all, why go through all that fuss and spend so much money on some sort of radical redesign? Here’s why: Because many people are stopped from going shopping at all because of badly designed shops.

It’s not all about the stepped entrance, although, yeah, that’s the biggest hurdle. I can’t really complain about the design of a shop or the placement of the till if I can’t even get in the place. But people think that just because there is step-free access to shops, that that makes them perfectly accessible. It doesn’t.

There’s aisle space to consider, there’s manoeuvrability to consider, and then the last hurdle is the tills.

Card shops are the worst, without a single doubt. The till and till person is about three foot above the floor, there’s display items and shelving sticking out on the customer’s side of it. I can neither hand my items and money over facing forwards to  the cashier, like everyone else expects to be able to, nor can I even get close enough sideways along to hand them over that way. So I have to hand it to my support worker, my support worker hands them over to the till person, this usually invites the idea that I am non compos mentis, and conversations happen, quite literally, over my head.

But things don’t have to be so awkwardly designed, nor offensive. If a bit of thought went in to these things, the following offence would never have happened.

Sometime a go, I was in Home Bargains (or as we say in Scouseland, Home AND Bargains). I’m sat 90 degrees to the cashier, because apparently people in wheelchairs don’t deserve to be able to interact with people face to face, the till is to my left, which is the worse of my two sides, and I smile and nod and say something something like “Hiya”, because the till worker has smiled and nodded to me first. It’s how we, quite literally in some cases, roll in Liverpool.

I pay my money before the plexiglass, with my right arm, because it’s easier and the person is nearer to me to reach over to pay. The cashier puts the money in the till, starts to hand me my change, and then in a sudden twist of fate, turns around and hands my change to my support worker, who had been packing up my items, and thanks her.

I was too surprised and confused to say anything, but I gave her a look. A confused look, which I then directed to my support worker, and back to the till worker. She says nothing to me, smiles at me… and I said something like “Well okay then…” and moved up and around and got my change off my support worker, threw it in my purse, threw my purse in my bag and left the shop.

I don’t know if that was prejudice at work or a brain fart, and I know I should have said something, but it’s clear that this situation wouldn’t have happened at all if tills were easer to navigate. Or if it did, I certainly would have been able to tell the reasoning behind it. Can’t exactly feign the possibility it’s easier to hand my money over to someone who is not me if the other person is further away than I am.

For as long as I have the mobility to, I want to be able to handle my money. I don’t see what’s unreasonable about that. I find it unreasonable that shops continue to force disabled people to twist their bodies around, painfully, in order to obtain the verges of the same service as able-bodied people recieve.

This might surprise everyone, but the only place I’ve shopped in which has deemed me human enough for face to face interaction, is Primark, with their wheelchair accessible Fast Track counters. Everywhere else does wheelchair accessible counters wrong. I still have to be sideways, and in places like post offices and banks, the wheelchair accessible counter comes with a lower counter on the customer side, but the person the other side is still a foot higher in the air than I am, with a card machine higher than I can reach, and the speaker hole a foot above my head.

But Primark, for all it’s ethical problems, actually does this one thing right. It does wheelchair accessible changing rooms wrong, but the tills? Can’t praise them enough. When there’s a member of staff on them, that is. There is a flaw in the system, and I’ve waited at the accessible till only to be asked to come to one further down the queue.

I’ve been thinking of putting a sign up above my headrest but apparently “If you expect me to twist around, I’m going to expect you to to do the splits” is both unreasonable and too long for a sign. There’d be some logistical problems, especially in the smaller shops.

I guess i’ll have to settle for risking injury to myself and then suing the shop’s arses off for compensation, to teach them that way.

Edited on the 18th of November, 2015:

I hardly ever update a post once it’s up, but a similar incident happened today at the till as the one I mentioned above.

Again, I was waiting before the plexiglass at the till. My mum was at the far end of the till packing my items in a bag for me, and the till guy turns to my Mum and tells her the total. Understandable, It’s not like I’ve announced that I’m the one actually paying for the items, he doesn’t know they’re mine.

We have a phrase up here in Liverpool, it’s “here’ya”. As in “here you go”, pronounced “ee’yar”. The polite use of it is “Oh, here’ya!”, with a friendly smile. And that’s exactly what I did, with my money in my hand. He ignores me, and stays looking at my mum, who nods at me. He looks at me, then at my hand with the money in it, and turns back to my mum…

I only got out an “Erm, well-” when my mum then said to him, “No, she’s paying. It’s her money!” and makes a joke. But, this guy had heard me, saw me with my money… and ignored me!?

What did he think, i was just a randomer trying to pay for someone else’s items, like a good friendly little wheelchair user who doesn’t know how the procurement of groceries work!? I mean this does feel like a heavy dose of pre-determined “Aw bless, she’s being friendly”. I can’t see why else this person would ignore me and my money, and then need reassurement from my MUM that yes, these ARE my items and I am paying for them. He saw us approach the till at the same time and talk to each other.

Next time maybe I’ll go around with a sign on my headrest that says “It’s okay, my Mummy has given me permission to pay for my items”.

For crying out loud!


AFJ Reviews Secret Cinema Presents…. Back to the Future

Wednesday 12 August, 2015

Sometimes, there are good places to be in a wheelchair, and then there are bad places to be in a wheelchair.

Last year, for my birthday, me and my friend decided we’d do something Big. And so, we went to London for Secret Cinema’s Back to the Future event. When I first looked into access, I wasn’t actually all that convinced or thrilled. I had no official response from the official organisers for at least four days after my initial contact, and in the meantime my friend contacted them and was told that staff would double check, but by law they had to provide equal access to the event so they were 99.9% positive that they were fully accessible and would even have wheelchair accessible toilets available alongside normal ones (or a phrase to that affect).

I looked into reviews of Secret Cinema and got the feeling they were quite hit and miss on the access front, and disability awareness front, and catering for those affected with food allergies and intolerances front. One review said that the event itself was accessible, but interaction with staff led to disappointment overall and the event goers leaving early. I then got a reply by someone not-so official over facebook and was told that, whilst by law they were required to provide wheelchair access, due to the nature of the event they couldn’t ensure full wheelchair access, and some aspects of participation might not be as accessible, but the whole event took place on level (outside) ground and there would be disabled facilities on site.

Sceptical, but optimistic, I battled through two days of their ticket selling site DDOSing itself to buy the tickets. Then I booked the hotel, then the trains, and eventually bought the costume. It’s not that easy to buy 1950s costumewear when you’re my height, with my unequal proportions, and when you’re in a wheelchair with those things combined, so in the end I got a 1950s-style blouse and a vintage 1950s skirt, and red lipstick and nail varnish to complete the ensemble. Looking back, I think I’d have looked more the part in a zoot suite, but that’s looking back with 20/20 hindsight, and without my glasses everything is quite blurry. Anyway.

Two days After I bought the tickets, I received a message over facebook giving us more information than any other ticket purchasers had been told, so that I could plan accordingly regarding access. It was also repeated that, the grounds being used were open and flat, and that the majority of the event would be accessible, there just might be some issues with the participations. And there would be disabled toilets.

Over the course of the months, dribs and drabs of thematic information was given to people. The nature of Secret Cinema is that everything is secret up until you arrive at the location, unless it’s a Secret Cinema Presents event which is somehow slightly different and provides more information gearing up to the day. So we knew that it was Back to the Future based, we secretly knew where it was abouts, and both me and my friend were given themed identities (IDs!) and suggestions for costumes. One thing that was a hot topic for the event goers, though, was that we would not be allowed our phones on us during the event, nor would we be allowed to have cameras with us. They said that this was because they wanted the night to have as much authenticity to it as possible, but also they didn’t want spoilers reaching the outside world and anyone breaching copyright, or people spoiling other people’s night of fun, if they were taking pictures whilst other people were trying to watch the film or join in on the events.

I often find that when there’s more than one reason for something, there’s actually no real reason for it but don’t want to give anyone any room to argue with logic.

There was also some tensions on facebook that the only information given out to us actually was all “In-game”, so to speak, and it didn’t make much sense. At some point, though, it was suggested on Facebook by their spokespeople that there would be a minibus put on to run people with mobility problems from the meeting point to the doors of the event. I wasn’t too bothered, me and my electric wheelchair were good to go, but if it had the legally required wheelchair space with the legally required safety straps, and a lift was offered, I’d have taken it to save battery.

As time went on, organisers seemed more happier to share jokes and references to how secret this event was meant to be, than give any helpful information that the modern day journey planners actually needed. (Best hotel to stay at? How late does the tube run? Do we need to go in costume or can we change there? What if we need our phones on us incase of a family emergency?) And then, after some people still not being sure what to expect, the first day came… and the event was cancelled.

Due to some planning mishaps (Word around the net was that the organisers failed to get health and safety inspections done in time, which meant they didn’t have permission for all of us ticket holders to attend the event and there was no crowd control plans put into place; And then photographs emerged of organisers and volunteers spending that first night painting in zebra crossings, test driving the cars, and still putting the finishing touches on the scenery.) they announced at the 11th hour and 59th minute, by email to a bunch of people who were told to leave their phone at home, that the event had been cancelled. People arrived at the meeting point with no knowledge of any of this, to be told by organisers and volunteers waiting for them at the meeting point, that the event had been cancelled. People had spent a lot of money to attend this event, the tickets weren’t cheap and people had flown in by plane from far and wide to get there. They had booked hotel rooms. For two whole days, the organisers hadn’t even announced there would be refunds for the price of the ticket, they just suggested that people could re-book at no extra costs for days at the end of the month. As many people pointed out, time taken off from work and plane tickets didn’t work like that. I still don’t know if refunds were given or any compensation offered.

Following that, the first weeks of screenings were cancelled and it wasn’t given the go ahead until a week later on the 1st of August, 2014. That was the day me and my friend had tickets for. I was due to be part of one of my childhood favourite films: Back to the Future. I could hear the theme tune from the second I woke up that day!

Was I worried it would end in disaster for us like it had many other people? Yes! But I tried not to let it bother me as I travelled down to London.
I’ll skip through the boring parts and carry on from when we arrived at the meeting place.Once off the overhead railway, we were greeted by actors dressed in 1950s clothing, ushering and pointing us in the right direction. We were late, butwe hadn’t missed a damn thing. Because, despite scare mongering announcements that any latecomers might not be allowed in until an appropriate time, if at all, we were amongst many people who turned up “Late” and we were led into a long-arsed queue that tailed very far back that didn’t move for half an hour. Early goers were already in, but most people weren’t.

(OH! I’d like to take this moment to do a Special thank you to fellow event goers, one even from Liverpool, who lifted me and my wheelchair up onto the train when assistance failed to show up with a ramp, and another special thank you to the scottish men who assisted in lifting me back out again! You all made the night possible in my eyes.)

One part we were directed through involved a set of stairs by the Olympic Park (in the Olympic park? My sense of direction has never been the best, and a whole year has gone by since then). We’d bumped into some people waiting for the lift, one half of the couple was on crutchers, and whilst everyone else was just jollywell going up the steps and across to where we needed to go, we were just looking at them with confusion. Stairs? No alternate route set out? Between the four of us, we came to the conclusion that that might have been the point that the minibus was meant to meet those with mobility problems, but the half of the couple without crutches went up the steps and asked one of the direction agents (It’s a lot easier to say than ‘One of the people dressed up giving directions’) about it and he said he didn’t know about any mini bus. He also said that we needed to go around the long way.

Wonderful. The whole event takes place in a flat area, but there was no mention of either needing to take the stairs or having to walk the long way around. Whenever walking was mentioned, it was always with the vague “short walk” or “Five minute walk”, with no regard to the concept that disabled people or mobility impaired people might just walk a bit slower and might have walking limits. I’m just glad I was in an electric wheelchair and wasn’t still depending on crutchers, like the be-crutched friend we’d just met, her hands were sore by the time we got to the queue. I wouldn’t have been able to do all the walking we’d had to do so far, and then the standing in the queue on top, with all the walking around we would have had to do have done in the place. Once again, it’s proof that people really don’t think things through when they talk about disabled access and provisions.

Moving on to the event itself, once we were inside. A miracle of miracles!

    BttF5 (2)

The setting for the Hill Valley Square was amazing. It was like a dream come true. You know that music video by The Offspring, “Why Don’t You Get A Job”, where they parade across the Hill Valley Square? I, ridiculously, had the greatest urge to rally up some people to do that. I know, it doesn’t make sense when I could have acted out any scene in BttF instead!

I digress. Everyone there looked amazing. My friend looked absolutely gorgeous in her vintage style dress. She pulled out ALL of the stops. I don’t think I pulled off the 1950s well at all.

As for the event itself, I’d say “Mixed reviews”. Whilst I think they did rather well in nailing the design of the square, I really found many faults with the idea that this was an accessible event. There were huts dressed up to look like houses, and I couldn’t get in to see them, and I couldn’t see much from the doorway. There was an open house design that was meant to be The Doc’s garage, and whilst everyone was going in and having a look around, picking up and playing with props, I could barely lean over to get close to the things right at the front.

The IDs we were given were so we could have a go at role playing whilst we were there. I didn’t bother, mostly because it was a hassle to get the ID cards out and interact with a bunch of people who seemed to always group in a way that blocked paths and views, but also because the places were these ID games were based, were based in these pop up shops that also had no access. I mean, sure, I might have been able to flag down the actors inside the shops to have a go at playing the part of my ID, but… everyone else blocked the doorways and inside was crowded. I couldn’t compete with that.
Whilst walking around, we kept being offered, by the actors, to take part in the parade. Each ID card made you part of a group, and people of those groups could meet up with one of the leading actors and learn a part for the parade. There was a “High School Drama Teacher” who was going to put on an acting bit for the parade, the shop keeper my ID worked for was doing a part of the parade. There was the farmer and the mayor, etc. We could have gone along to any of these groups and become a part of the parade! But we didn’t bother for two reasons:- We didn’t want to risk missing anything going on around the school area and on the square, but also, I wasn’t in the mood to play Compromising Cripple. That is, pretending to be perfectly fine with only half joining in due to limitations being put on me (steps to get into these places, would there even be dance moves I could do, could I have even held one of the heavy props,would I have been given a line just out of pity?), and having half of the experience. I just wasn’t in the mood to be the odd one out.
I really want to assure everyone that I did have a very good night. I had a go at a goober brownie and I loved that! Although I did start feeling the cold by the end of the it and feeling a bit ill as a result, but the event in and of itself was fun! It was an experience. It could have been a better experience, but it was amazing to see. The way they spliced the actors acting in front of the film AS the film played on in the background was brilliant! The cars were brilliant. Seeing the Biff Vs Marty McFly chase across the square before the film even started was great! Dancing in the school hall was great!
There was just a few moments that weren’t great. And the next bit is one of them, and it’ll stay with me forever. I apologise in advance for the subject this surrounds.

Shortly after the film started, I needed to pee. Not to brag or anything, but I do have good “capacity”, but I also have a bit of nerve damage in my back. Sometimes certain factors will mean that first signs of needing to pee will be when I’m at “maximum capacity”, so to speak. I could have waited another twenty minutes to see which one it was, but I was worried that I’d miss better things later on, if nearer the end of the film was the point when I hit maximum capacity and could not wait any longer. So I headed off to find the toilets. It was an executive decision. I got lost at first, but got pointed in the right direction of the toilets.
There were rows and rows of normal portaloos. There was a men’s section, then there was a woman’s section. I couldn’t see a disabled section. I asked one guy, he pointed me back in the direction of the women’s toilets, and when I repeated that I was looking for the disabled toilets, he said “Oh, I don’t know then.” Thank you, oh helpful member of staff! Luckily one of the actors (A Libyan!) overheard me asking and he pointed me in the right direction. There were two disabled toilets. Two. And looking from the outside, I wasn’t convinced that anyone in a wheelchair was actually going to be able to use them. So I went to open the door, and it wouldn’t budge. The door said vacant, unlike the one next to it, nobody said “Oh someone’s in here, please wait a second” so I gave it another pull, and nothing. I went back to the actor, and I think I asked if they were the only accessible toilets around, and he said yes. So I went back and tried a third time. Still nothing. On the fourth time, I used my right hand to open the door, and used my left hand to wiggle a bit that was sticking out, and that’s what made it finally work.
And I opened the door… and the smell that hit me was awful. It smelt… oh, bad. If I could have put a name to it, it would have to be that stale smell of a pub mixed with sewer milk. And, for a disabled toilet, it was anything but accessible. The toilet was directly in front of the door, on the left. There was no turning room, there was no lever arm to pull down, although even if there had have been, it wouldn’t have been any use because my wheelchair was in the way. I twisted myself to see what the situation was in this very smelly room, and I couldn’t close and lock the door once I was in. I’d have taken a photo or a video, but hey, no phone! And then I looked down at the toilet. Big mistake. Very big mistake. There was just something in there and it was brown and liquidly, and all I could think of at the time was “I hope that’s beer spew”. The toilet roll was also just down by the side of the toilet, I couldn’t see where the hand towells were because they also weren’t in the designated dispenser, and it was also missing a hygiene bin for medical accessories. Not that I need it, but some people might have!

I gave up and I backed straight out of there. And nearly ran a young girl over for her troubles. She, although walking, required the disabled toilets. And I said to her, and her mum standing next to her “If there’s any way you can use the women’s, I’d recommend it. It is BAD in there. I didn’t even bother”. And the Mum said she thought I’d gone in and came back out again very quickly. They must have followed the actor’s directions at the same time I was following them.

Me and the mum got talking. She asked me how I was finding it, and I explained everything I’ve explained here. Over all, it’s pretty good and I’m impressed, but I am disappointed that the little things, all the extra touches, were made inaccessible to me. And she explained that she had a daughter with a severe disability and she would have liked to have taken her to an event like this, but the unpredictability of the concept made it unfeasible, and with the lack of actual facilities and provisions for disabled people, she was glad she didn’t even risk it. She also explained that the daughter who was braving the toilets had a bag that needed sorting out, and that’s what they use the disabled toilets for. The space, the facilities to assist with balancing, and the extra hygiene bins they put in there. I said there was just nothing like that in there, and I was actually quite angry at the organisers for selling the event as accessible when two thirds of the event hadn’t been. It’s alright saying they will provide “accessible toilets”, but when they’re not fit for purpose, they might not as well be there. I can say with an educated guess, that they just got the cheapest things on offer and didn’t care enough to put thought into it.
The young girl came out and agreed with me that it Was pretty disgusting. And it’s only just occurred to me now that during that whole conversation, and we must have been talking for 15 minutes, nobody came out of the other toilet. It’s also just occurred to me that maybe someone jimmied the door on the toilets so that nobody could use them, because they were in such dire conditions. It’s my belief, that due the poor and offensive inadequate space of the toilet and little numbers of disabled people there that night, the disabled toilets had been designated as the spewing receptacles. Because why throw up in one of the many other toilets when you can throw up in the disabled one?

After almost being ran over by The Libyans on my way back (My new claim to fame!) I carried on my night enjoying the film, but with the worry that my situation might hit 11 and I’d have to risk public indecency by sneaking a piddle behind the fake shrubberies. I didn’t! But cold did set in and I got pains down my right leg (left leg is too dead to know when it’s too cold).

Like I said, I did enjoy the night. It was amazing! And we did manage to get some pictures, because they were selling over-priced cheaply made disposable cameras on site! It’s a shame that many people’s broke, including my friend’s, meaning they wasted £8 on them for nothing, and maybe more if they still got it developed. And those that were developed were of very poor quality. But mine did work, and quite a few turned out as best as they could! I didn’t want to use it for the toilets, for understandable reasons, but I got the photo I’ve posted above and some other ones.

I would probably go again if they did Back to the Future 2. Because that is my favourite film of the trilogy. But I would contact them before hand and lay down exactly what it means to be accessible, and sue their backsides off if it was the same situation all over again.

I think, besides watching the film and watching the actor’s in front of the film act parts of it out, the highlight of the night was dancing. The first time I met my friend, 10 years before almost down to the month, we went on an “Induction To 6th Form” trip together, which was at a university and it had a disco at the end of the night, and we danced together in our little group from the second the dancing started, until the night ended. And it reminded me of that.

I think the worst bit of the night, besides all of the access issues, was when the Doc was meant to zipline down from the clock tower, the zipline failed. So we had one Doc visibly left stranded on the clock tower with the spot light still on him, whilst a second Doc emerged from the darkness and spoke the lines along with the film.

For anyone wondering what happened with the pee situation (and who knew 10 years ago that ten years into the future I’d be talking about peeing online for all the world to read?! My sixteen year old self is dying of embarrassment, which sounds to me like a plot for BttF4), It hit 11 when Biff was pulling George McFly out of the car, but I made it to the hotel (IBIS) with my dignity and bladder intact. Which is where, to my dismay and to add awkwardness to mild hypothermia, we discovered the supposed wheelchair accessible bathroom had a sliding door that didn’t shut properly. You’d shut it, it would slowly slide open again and reveal about 4 inches of the bathroom. So much for dignity…

It was also a poor attempt at being wheelchair accessible. Like the Portaloo, once I was in the bathroom, I struggled to close the door after myself. It took a lot of bodily twisting. With the lack of space in there, there would have been no way of being assisted if I’d have needed assisting, and no way of showering independently if I’d have wanted to take a shower. The shelf for the shower was far too high, I can’t remember where the controls for the shower were but I remember thinking there was a problem with them, the towel rack was outside of the shower, out of reach of where the stool would go, the shower stool was a collapsible one resting up against the wall, the toilet was about 5 steps away from the shower, the shower had a lip, and oh yeah, the shower was on the side of the bathroom that the open sliding door revealed.

Me and my friend are close, but we’re not married.

For the Secret Cinema Event, I’ll give it a 6.5. I really want to give it a seven, but that disabled portaloo has scarred me for life.


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?


Blog Against Disableism Day – 2014

Friday 2 May, 2014

Yesterday was Blog Against Disableism Day.

I would have liked to have blogged for it, but unfortunately the days before were busy ones and I’d overdone it, so I spent most of yesterday in bed suffering the after affects. Gone are the days were I can blog, lying back in bed with my laptop on top of me, crushing into my ribs.

Shame really, I wrote some of my favourite blog entries with my laptop crushing into my ribs. (But remember, correlation is not causation!)

Anyway, so that’s why I didn’t blog yesterday, on the day, despite it being a topic I’m very passionate about. This topic is, as they say, very much up my street (dropped kerbs implied). So I’m blogging now. I feel like nothing shows how life in itself is disableist than missing disabled-related events because of a disabled-related problem.

And that’s largely the way disableism is for me, and for a lot of people no doubt. Disableism isn’t just about offensive opinions and words, insults that can ruin your day or discriminatory actions, it’s also passive attitudes and unchallenged perceptions.

I’ll give you an idea of how living with a complex, fluctuating disability is quite swings and roundabouts, in regards to disableism, from my own experience.

When I could walk, before the crutches became permanent accessories for my arms, I stood hunched over, on the worse days I walked oddly, I was the height of a ten year old, and quite frankly, my conversation skills didn’t really match my appearance, and thanks to many flus, acid reflux and a post-nasal drip, I also have a voice deeper than what I should have. I got stared at, a lot. I mean, a lot. I’m not being paranoid, even friends commented on it. Children would just stand and stare at me, some people would be taken aback when I interacted with them, and just in general, I could tell people didn’t know what to make of me. I assume, to them, I was just all around odd.

And then I was permanently on crutches, and I found that whilst adults took to me better, I assume down to them being able to categorise me better, children’s staring increased. Again, that’s not me being paranoid, this was also something a friend at the time noticed and commented on. I didn’t shave my head or get my nose pierced for this reason, but at least when I did do those things, it gave them something a bit more interesting to stare at whilst they were staring.

I remember on one memorable day, I got ID’d because I didn’t passt for eighteen, my disability was questioned, because I was only on crutchers, and then got referred to as a lady. Not even young lady, a child called me a lady.

I just never knew, during that time of my life, what attitude I’d be faced with next.

And then i was in my wheelchair more, walking less and less. It was the strangest thing, even with my shaved hair, in my purple wheelchair, always by myself, always seemingly a bit out of place, I got stared at a lot less. Again, something that friends noticed on my behalf.

The downfall?

Pretty much everything else. Everyone around me just didn’t expect me, now wheelchair bound, to want to carry on as normal, seemed to think I was expecting too much when I expected to be able to carry on as normal. I still took the bus, but god forbid I ask the driver to put the ramp down, god forbid I even expect a ramp in the first place! I tried to shop, and in some ways it was suddenly easier in a wheelchair, but it was also more difficult. I realised I could carry things on my lap, whereas using crutches meant I never had a free hand to carry things with, and I was always too frightened of being mistaken for a shoplifter to put things in my pocket until I got to the til. The one time I asked for assistance, I practically overcame crippling social anxiety to do so, it was for one thing, he picked it up and carried it all the way to the fil for me. It was a beautiful moment.

I did not have the same experience when in my wheelchair. I won’t name the shop, but I went in for a jar of dip. It was on the shelf that was just above my reaching height, and I flagged down a middle-aged man, who did actually work there not just a random stranger, and asked him if he could pass me the jar down. He did so after a sigh, and pointed out, ever so helpfully, that if I need help, I should get a carer.

And that’s the crux of my experiences with disableism. People in general do not understand complex, fluctuating disabilities, or that disability is a spectrum.

At that point in my life, I did not need a carer. I needed people to do their jobs and a jar of dolmio salsa dip. Disabled people are only seen as a burden, people you’re made to go out of your way for, because we’ve not been given the opportunity to be independent.

Now I do need more help, and I have a support worker. My condition is worse, and sadly I find people’s attitudes towards disabled people worse. If I could go back to the days were being stared at were my most upsetting experiences, I would in a second.

But that’s not reality, and reality is getting worse. The disabled are fighting a war we’ve been set up to lose. We’re meant to have jobs, but we’re not expected to want to use public transport to get to them. DLA is switching to PIP, a lesser benefit that is insufficient and it’s taking motability down with it, and Access to Work has been cut. Lately I’ve been in arguments that have started because an able-bodied person has refused to give me access to the wheelchair accessible facilities I require, because it puts them out, my well-being be damned. They wouldn’t even have such facilities to appropriate if it wasn’t for disabled people demanding equality.

DSA is changing, at risk of going completely. So disabled people are meant to have jobs to pay their way, but without the education and qualifications to qualify for them? There’s the attitude with ablebodied people that if they don’t go to university, at least they can try for manual labour type work or retail. The chances of a severely disabled person being able to for that type of job are low, and if they could, the chances that they’d be hired are also low.

Negative comments, insults, threatening behaviour, ignorance, refusal to act in a helpful manner, online harassment, I’ve experienced them all. But there’s something deeper and darker at work. If you’re well enough to play along with the system like I once was, you feel like you’re fine, that it’s not that bad for you, but it is. Because you have to play along with the system. When you stop being able to, you realise how broken our society really is. And the foundations are in the disableist attitudes.

We can’t correct people’s derogatory comments until we have the support and understanding from the government to flourish. The systematic break down of a disabled person’s life needs to end, not the disabled person’s life.

And one more thing, can we knock the term “differently abled” on it’s head, please? I can’t think of a more patronising term for disabled that makes me queasy, and I’ve heard a few! It completely erases the existence of disability, and it’s as harmful as the phrase “the only disability is a bad attitude.” No, disability is disability, bad attitude or not.

I’ve learnt to adapt because I’ve needed to, and it wasn’t easy. I life my life very differently to what I used to, and it’s not easy. I can no longer go for long walks, it hasn’t given me the ability to fly, blow up things, or see ghosts. I’m not a member of the X-Men, i’m disabled.

All the term “Differently Abled” says to me is that it’s more important to put a positive spin on disability than it is to understand the complexities of disability.

I am disabled, and I’m proud at working around my obstacles, but if i do things differently, it’s because I’m just that good adapting. But I, and many other disabled people, adapt out of necessity because the greater society fails to adapt to us. Most buildings are still built with stairs, lifts are still mostly an afterthought.

Calling disabled people Differently Abled isn’t just insulting to many disabled people, it’s also insulting to able bodied people.


Just exactly who is the NHS for, anyway?

Tuesday 25 February, 2014

Before I go off on one, I do want to make it clear that I love the fact that we have an NHS. I am very proud of what our country can offer it’s people. Almost every NHS hospital in Merseyside has offered it’s services to me through my years on this planet, and I wouldn’t be here without them. I am also very grateful for everything the NHS have done over the years to help my friends and family live as well as they have, did and do so.

But… it’s not perfect. And over the past few years I’ve found the gap there is between NHS and the private sector of healthcare has widened. And it’s not the NHS’s fault. I mean, alright, sometimes we do get pretty bad doctors. I’ve had my fair share of them. But I think we can all agree it’s mainly the fault of the big cheeses who work in their big offices who make these stupid decisions, because they want to run hospitals like business and not like hospitals that have people to care for. Lots of people. Including lots of people who aren’t compatible with one-size-fits-all care stock.

Like me.

Today I want to rant about one of the most frustrating hospital appointments I’ve been to in possibly over a year. Which is saying something, because I think I’ve had worse very recently! At my last appointment, about a month ago, my ambulance turned up ten minutes minutes after my scheduled appointment, I turned up an hour late for my appointment, the clinic was running over an hour late anyway so that cut some of the waiting around in the clinic for me, but still… And then the doctors all went for their lunch. I was the last patient of the morning appointments to be seen, I was led in to the consultation room and waited a further twenty minutes for my specialist’s underling to come in and tell me my scans weren’t the most perfect, but they’re not so bad to need operating on. I was told to scrap the leg braces because they weren’t helping*, the underling had to leave the room twice to speak to the Big Man Himself to see if there was anything they could do for me, the conclusion was no; I was then asked if I wanted to be discharged (My answer was no) and then sent on my merry way to be seen again in a year.

And yet today’s appointment was all the more frustrating.

First of all, I get ambulance transport to the hospital. This is because I don’t have a car, nobody in my family drives, it would cost £40 a round trip to get to and from the hospital in a taxi and I can have between one to four hospital appointments a month. I wouldn’t be able to afford that. I can’t guarantee that I can get on the two busses/the bus and the train needed to get me to the hospital, I certainly wouldn’t be able to get on busses around here in my electric, and my primary carer is my mum, she’s also disabled and can no longer push me in my manual.

There’s no other way for me to get to hospital appointments.

But they’ve recently restricted access to the ambulances so much that hardly anyone is meant to qualify for patient transport. This is apparently so they can save money. They ask questions such as “How often does the patient leave the house?” and “Does the patient do the weekly shopping?”. Neither of those things have much to do with needing an ambulance to go to a hospital appointment. It’s as if ATOS has taken over, it’s awful. I could be the most mobility impaired disabled person out there (I’m not) and go to a day centre every day, needing to be tube fed and toileted, but the fact that I leave the house at all (they say rarely is once to twice a month) would leave me without transport! They don’t care where someone goes, even hospital appointments count against you.

And how does doing the weekly shopping impact your need for patient transport? What if, like me, you get the weekly shop delivered? Technically, I do the weekly shop. I go online, I select the food, I choose the delivery time and date. It’s somebody else (either my primary carer, support workers or other family members) who opens the door, let’s the deliverer drop the food off, brings it in and puts it away. What if, once again, I was that mobility impaired person with all those extra needs? What part of those extra needs impact on going to the local supermarket, and with good planning, buying the weekly shop?

It’s the pure association and ignorance playing the part here. Associating shopping with, I don’t know, frolicking around Tescos and pirouetting down the isles, throwing tins of beans on a whim into the trolley like some sort of improv shot putter, and associating disability with being homebound, sickly, non-compus mentus.

And yes, there are people that disabled out there. I went to school with plenty of children that severely disabled. And without wiping them out of existence, there needs to be an acknowledgement that there is a range, here. There are people who, like me, have bad enough physical disabilities, that our needs are similar to the needs of people with the types of conditions that affect them more widely. I need a hospital bed because of extra support I need to sit up and lie down, I’ve talked about this before, but when trying to get one I was originally blocked on referral. Because they only offered hospital beds to either people receiving palliative care or dealing with conditions like severe cerebral palsy or muscular dystrophy. I’ve neither of those, my bones just grew wrong. Even the second try, after seeing an Occupational Therapist, I dealt with a district nurse who said I didn’t “sound” like I needed a hospital bed, because I talked so well over the phone…

But back to the ambulances. They say they’re restricting access to save money, despite also wiping out those with complex conditions which vary day by day… then why did a taxi pick me up this morning?

My hospital, maybe the trust, have a contract with this one firm. This one firm have taken me to and from the hospital more times than I can count. Which is really unfortunate, because this firm is quite frankly awful. I can’t tell you the amount of times I’ve argued with the drivers about straps for my wheelchair, needing the ramp to get me up, needing the chair up to go backwards. The amount of times I’ve asked the driver “Have you got the straps?” for them to say “Yeah, love! Don’t worry, yeah? I’ll put the straps on you!” and then just uses the seatbelt.

The seatbelt is not a strap. The seatbelt does not stop my lightweight wheelchair from skidding. I’m not wedged in in-between anything, breaks only stop the wheels from turning. I move, it is inevitable. I don’t know how a taxi firm with a hospital contract can get away with being so lackadaisical. I’ve tried complaining, it got me nowhere. Most times I have to just bare it, because I’m either that desperate to get home or I can’t risk being that late for a hospital appointment. Ambulances check in with hospitals when they’re running late, taxis don’t.

And I go through all of that and it can’t possibly be saving the hospital any money. That’s £20! For one single journey. Today almost all ambulance patients were being taken by taxis, and it’s only one patient per taxi. I was pretty local, there was one lady going to Warrington! On your average ambulance, you can take at least three people and their carers/assistants to the hospital. Not everyone has or needs someone with them. Most of the time when I’m on the ambulance, I’m not just the only person in a wheelchair on the ambulance, I’m the only person with a carer with them. Everyone else is by themselves. That’s five patients and one carer on one journey.

I know I complain about journeys taking hours to get to and from the hospital, but that right there sounds more cost effective to me. And to be honest, most of the times the longest journeys take as long as they do because certain ambulance drivers like to go all the way out to knowsley to get to the hospitals. I’ve been on ambulance journeys to Preston Hospital that took less time than the jolly jaunts to Broadgreen Hospital via Knowsley.

Yeah, it’s so fun being disabled.

And now back to my frustrating appointment today.

After being picked up by yet another taxi driver who doesn’t know what to do with passengers in lightweight electric wheelchair, I got to my clinic’s waiting room. Orthotics today, that means shoes and braces and supports and things like that.

Once again, they’ve redone the layout of the waiting room. And yet there’s still no place for a wheelchair user to park. I always end up in the way of someone, because I always end up parking alongside a chair, so it’s like I’m sitting there and only taking up one seat. But then I stick out, and people can’t get passed me.

But I’ve long since concluded that hospitals only want the healthy sort of patient, so it’s no surprise to me that my designated space is either outside the room or at the risk of being tutted and sighed at.

As for waiting times in the clinic, I was actually very lucky today. Barely five minutes parked and I was called through.

I explained my problem. My shoes, which took almost a year to get in the first place, and almost another year to get them fit for purpose, were fine for a while, but recently my toes have been getting squished at the tip of the shoe. I did explain all this to the receptionist when I asked about making the appointment, because I made the appointment when I was there for the aforementioned worse appointment, with the two hour delay, because you don’t always need an appointment to be seen. They have a drop off/drop in provision where if the problem is small enough, you can get seen to then and there, they replace the missing part or get something from the stock and everything’s sorted.

But I was told I’d need to see the orthotocist, hence this appointment.

And the orthotocist looked at my shoe, took out the insoles and said “You’ve still got all of these insoles in.” It turns out, after my last appointment with the last orthotocist I saw, he should have told me that there was a settler insole inside my shoe that needed taking out after a month or so. It’s a type of insole that’s in orthopaedic shoes to help the foot and shoe work together until the shoe’s broken in and the person’s used to the orthoticness of it. I should have at least been asked if I’d removed it when I made the appointment, and I wasn’t.

And that annoyed me enough, but then it got worse.

I figured, it can’t be a complete waste of a journey, because last time I saw the orthotocist, I mentioned needing new trainers. See, I don’t just need a lift on my shoes to even up my leg lengths, it’s actually virtually impossible for me to buy any type of shoe that fit my feet. I’m a size two. Adult sizes start at three in most shops, children’s sizes finish at one or thirteen in most shops. Most size two shoes that I see are very shapeless, I don’t know why that is, and most have patterns on them, making it very obvious what age range the shoes are for.

The last time I saw a size two pair of trainers, they had Dora the Explorer on them. The time before that, giant butterflies. I’ve had my trainers since 2009, and they’re falling apart. Especially the one that goes on my useless leg, part of it seems to be only held together by the pattern that’s almost peeling off.

So I mentioned it to the orthoticist. And he said “That is in your notes, but the trainers that are in our catalogue aren’t fit for purpose, so we can’t give you them. We can’t really give them to anyone, they’re that unsuitable.”

You see, now that the big cheese in their big offices have made all these restrictions to what doctors, nurses and all the various therapists can offer, in a bid to save money, it seems as if all that’s on offer is what can be bulk bought in stock. For any extra needs, they have to stick to one catalogue, and what those catalogues offer might be what you need at the same time as being completely unsuitable.

I remember when I last needed shoes. They were so awful and obvious, they screamed “special needs shoes” and I never wore them. I was about eight. And I thought we were done with these sort of things. I thought we were way beyond the times of making disabled people feel like clowns and circus freaks. Gone were the days when a lift on a shoe was actually a big heavy boater shoe, making you look like you’ve nabbed off with one of Bigfoot’s feet. You see? Necessary but unsuitable.

*My leg braces weren’t helping because the smaller size was too tight around around my thigh, and the bigger size slipped down my leg. The braces were worn in an attempt to stop my knees from buckling further, to make the inevitability of needing an operation on my knees straighten a little bit further off. But all they could offer me was two braces. Both actually designed for men to wear, rather than women, and neither of them any good for an awkward dwarf like me.

Again. Necessary, but unsuitable. And it just happens that me going without is probably saving the NHS just a small bit of money, because those unsuitable braces that I won’t need to replace the ones I won’t wear out in the future can be tried by someone else. Well, saving them money until I need another operation to straighten my legs again, that is.

I was told that I would be better off buying my own. But if I and other people could buy our/their own shoes, regardless of any extra needs we/they might have, don’t they think we’d all be doing that anyway!? Just exactly who is this NHS for anyway? Why do they think I depend on this free service? For a laugh? There is nowhere else! I’ve even tried buying size 2 shoes online, it’s virtually impossible, or expensive. And the one pair I did buy had the shallowest area for the foot I’ve ever seen and they ended up going to charity.

Is this a case of “What do disabled people need shoes for? Why do they need to look nice or be comfortable?”. Are we not allowed something so basic as a pair of bloody shoes, that are both fit for purpose and respectful?

I’m lucky I could get a good pair of boots that didn’t shout “I’m an orthopaedic boot designed for women in the war time!”, and I chose them because, not just because I didn’t want to feel ridiculous wearing a very old fashioned design of a shoe, but also I do want to work some day. I don’t want the only thing to stand out about me in a job interview is an embarrassing pair of shoes. It’s bad enough that disabled people have less of a chance of being hired than average people, but women are also judged on their appearances in job interviews rather than their employability to the job up for grabs. Some of those shoes in these catalogues would easily cost me jobs more than the wheelchair. And no, I don’t think I’m being ridiculous.

But no. The trainers aren’t fit for purpose. I feel as though the NHS has a duty of care to people who need help, and I know shoes aren’t a matter of life or death, but I wouldn’t need their help on this at all if I wasn’t disabled. This is part of my disability, this is something that, as part of my disability, needs seeing to. Disabled people deserve the respect to have something basic a wearable shoe. This is not the 1950s!

All in all, I went all that way for essentially nothing.

And then I waited until it was obvious no ambulance was available before the morning shift ended before I was sent home in another taxi. Because that’s what they do. That’s why I’m sometimes just so desperate to go home, I don’t care the taxi puts my health and safety at risk, because they wait until the ends of shifts before ordering someone a taxi. I have quite often waited over two hours in the ambulance lounge, until the end of the last shift for clinic patients, before I’ve been sent home in a taxi. All that time and they could have just done the same thing, hours before I was in too much pain for my pain medications to deal with.

To add insult to injury, any ambulance that did pick up the odd patient was only taking one patient at a time. Remember what I said about how many people you could fit in an ambulance? Surely it would have been cost effective to try and squeeze as many people on rather than spend £20 and even more?

These are the problems with the NHS, and it’s not the NHS. It’s the people in charge and their poor decisions, their lack of checks of quality, and everyone’s acceptance of organised chaos. And complaints falling on deaf ears.

This is just patient transport, shoes, and for my unfortunate few, supportive braces, but don’t you see? Look at the bigger picture. Look at how much more compromising NHS patients are having to do! We accepted long waiting times, we accepted needing second opinions, we accepted clerical errors and we accepted communication problems. Now I am being told to, for all intents and purposes, go private to help them help me. Because that’s what I’d be doing if I forked out money for custom made shoes.

How much more do we have to accept? Just exactly who needs to suffer or miss out on a good quality of life because of budget cuts within the NHS before something changes for the better? As in with people in mind, not getting private companies involved. Because they’re not doing us very well so far!

If the government really wants the NHS to save money, they should get rid of all their ministers and higher level administrators that have involved themselves in hospital matters, and turned the whole thing upside down.

And please, before anyone tries to say I’m being ridiculous and suggesting places to me, I have tried everywhere within reasonable travelling distance. Windsors, Clarks, Shoe Zone, Shoe Market, Marks and Spencers, Tescos, Primark, JJB Sports, Sports Direct, the odd little shoe shops here and there on the high street, Ebay. It’s the same everywhere. Adults start at size 3, children’s end at size 1, the odd size twos I can find are covered in whatever the latest fad is for children, or simply just don’t fit properly.


Belated Asexual Awareness

Tuesday 21 January, 2014

If there’s one thing I’m mostly disappointed with myself about, during what I’ll call The Absence of 2013, it’s that I missed Asexual Awareness Week. It’s something that I never wanted to miss, even if I had nothing new to add, because spreading awareness and understanding is that important. But I did miss it, and now I want to fix that.

Better late than never, as I say.

As it happens, I don’t really have anything new to say about what being asexual means or what asexuality is, that I didn’t already say in 2012, or in 2011. From what I know about the asexual community, in all it’s little coves that it’s found in, it’s unfortunately just the same as it was when I last spoke about it. There’s civil unrest and quite a few short tempers. Asexuality is not being helped by those people who have this wacky idea of what acceptance is, as long as you accept what they say and belittle others who disagree with them until they either go away, or agree.

Why yes, I am talking about Tumblr.

Anyway! What I want to talk about today, is friendship.

There’s nothing much more important to me than my friends. Whether that’s because that’s just the sort of person I am, or because I’m disabled, or because I’m asexual, a sum of all those things, I don’t know. But it’s a fact.

My friendships make my life worth living.

To me, my friends are my first port of call. I imagine my life’s priorities to be in a rucksack with as many pockets as I need, and everything I need fits into this rucksack, and only things that fit into this rucksack are what I need. There is an order to this rucksack, and they are ordered by priority.

Sometimes my priorities change a bit. Sometimes my friends do go from being in the main big chamber to being in the smaller chamber of the bag, like for when my health gets too bad and dealing with it swallows up all my time and energy by no choice of my own.

But these things that are in my rucksack, they might move around a bit, but they remain in my rucksack. Hell, even education, which I’ve not attended since I dropped out of university and became a failed journalist, remains a priority. It’s placed in the little scratchy Velcro pocket at the very front of the rucksack. It hurts to put my hand in there, it usually takes more effort than what I get out of it deserves, but it’s in there.

Are we all following my rucksack metaphor for life?

To sum up: I’m asexual, I have friends in my rucksack, and I don’t have a boyfriend pocket, because my friends are mostly all I need in life. As well as food, sleep and good medication.

Ok? Ok!

So. Now that I’ve made myself sound like a wierdo…

These days, there has been a slip of how important friendships are for people. There is something out there teaching our society that, at some point in life, friendships should be put on the back burner for romantic and sexual relationships. Trying to keep a friendship exactly the same as it was before at least one party enters into a relationship is seen as, at best noble but unsustainable, and at worst pointless and childish. Having a third wheel at the side of a romantic relationship is not good for the relationship, but let me tell you, it’s no fun being that third wheel either.

The solution is almost always for the party who doesn’t have a romantic other half to get a romantic other half. Or other friends. Other friends hardly bode well for the friendship, if they care at that point, where as an other half at least evens the score.

Or that’s what my observations and partial experience has taught me.

But when you’re asexual, or when you’re an asexual who doesn’t want sex or a romantic relationship, or like me, an asexual who wouldn’t mind a falling into a non-sexual relationship but don’t plan to go looking for one because there’s a minefield of sex out there and really, I don’t need anything extra in my life than the friends I have… (rucksack is full) That solution is not a solution. It’s like asking me to grow an extra spleen. Why? To make it easier for everyone else?

But very recently, as understanding as my friends are, one of my friends – the friend behind the idea of me signing up to a dating website, even – who is very happy in her relationship and, I consider myself very lucky here, isn’t one of those people to put aside friendships for romantic relationships, said something which upset me regardless of how she meant it.

Happy in her relationship, she asked me if I had any news about anything romantic in my life, and I told her my usual answer. No, and I doubt there will be, and that’s fine.

And she said “I don’t want you to end up alone, though, do you?”.

Now, let’s ignore the fact that we’re in our twenties and have plenty of time to not be alone before we’re both old and grey, and hopefully sometime after that too, and focus on how those words hurt. What I think she meant was, “We’re young and we’re lively people, you need to get out there now and meet people. I’m happy, I want to make sure that you’re happy too.”

But unfortunately, I can’t help but take those words differently. To me, those words said “Friendships only go so far and last so long. When we’re older, you won’t be able to depend on mere friendship to get you through life. We’ll all have something more and more is better.”

It gave me this mental image of something like the ballroom scene from Labyrinth, except everyone is dancing with everyone else, there’s no David Bowie, and I can’t cut in because in this weird world I’ve imagined, nobody dances with friends anymore.

I’m aware that sounds more bizarre than the rucksack metaphor, but that’s what came to mind.

What my friend said, which so many other people think and automatically say as well, it makes me feel like everyone who isn’t asexual imagines that being asexual is what leaves you lonely and alone. Where as, from my point of view, it’s other people who don’t see how important friendship can be that can make me feel lonely and alone. Other people deciding for me that not having a romantic relationship will make me lonely, upsets me.

This isn’t universal for asexuals. Many asexuals have romantic relationships, some have sexual relationships and they’re happy.

But for those of us who need friendships in our lives, this is how a modern hyper-sexualised society, where two is a couple and three is a crowd, can make us lonely and alone.

Friendships are enough for me, if my friends can be around to be in them.


This is what I’d call a bad week…

Tuesday 14 May, 2013

When your unfit for work and unable to juggle the average life path with hospital appointments and illnesses, you get good at picking up versatile hobbies.

When your ailments, conditions and disabilities get in your way of your hobbies, it can be frustrating and upsetting.

When your ailments, conditions and disabilities get in the way caring for other ailments, conditions and disabilities, making every single hobby impossible, it is, for me at least, unbearable.

When hobbies become unenjoyable because other people leave a sour taste in your mouth, sometimes it’s not even worth the fight of getting to them.

My back’s been rather bad as of late, due to a number of factors. Weather, limited access situation, illness,, and the general discontented skeleton the rest of me is attached to. I’ve taken to lying down most of the time, which is fine until the upper part of my back flares up, or the leg that needs to be bent almost all of the time can’t bent enough.

And it means everything I need gets laid down on top of me, and it crushes into my ribs, making my back even worse. I have spent every other day these past few weeks, just lying in bed, awkward angles to support malformed joints and bones that still don’t bring me comfort, and only my radio for company.

So imagine how upset I was that, after all of that, I still tried struggled through one morning to use my computer only to be met with a discussion on eugenics. Even worse, this discussion was had by two friends I never thought would have these opinions.

It started out as a discussion about the bedroom tax. The standard “why should I pay for people to live beyond their means?” argument which shows they don’t know much about living in council houses (call a spade a spade), which then escalated. It went on to the agreement that people who knowingly have genetic conditions hardwired into their DNA, should not have children, and foetuses who are found to have severe disabilities to be aborted, and to parents being sterilised just in case, and in the case of a child being born with severe brain damage or some other non-genetic hereditary disability, they should let nature take it’s course and let the child die peacefully should it have difficulty after birth, instead of helping the child fight to live.

Now, I’m not egotistical enough to think that just because I know these two people and their choice of place to have this discussion was where I could read it should have stopped them from discussing it. They can talk about whatever they like. That’s what these places are for.

But I, as someone with a genetic condition, who grew up with other children with genetic conditions, as well as un-genetic conditions, I am offended, appalled and upset to find that these are their opinions. That, quite essentially, could be me, my family and my friends they were talking about. I don’t care how, if confronted, they’d choose to separate me from those people they were talking about, the fact is, I am part of that group they’re wishing to eradicate. And for what? To better the gene pool? For the greater good?

There’s no other way to describe this, this is nazi territory.

I struggled with a laptop crushing into my ribs to read that?

First and foremost, it is both the parent’s decision what should happen to their disabled child. It is the parent’s decision if they want to give birth, as planned, to a child that happens to be disabled. There are people who believe that life begins at conception, there are people who, under no circumstances, would agree to an abortion, there are people who cherish every life they are blessed with, regardless of religious beliefs. If that life happens to be a bit different, take a bit more time and effort to look after, then so be it. That is their decision, nobody else’s. You have no idea what that child has to offer, or what life has to offer that child.

If the parent knows they can’t cope with having a disabled child,  which is a full time job, with a lot of extra costs and considerations, then it is their decision to abort.

I’m sure we’ve all heard the argument about Down’s Syndrome, now they’re saying it about Cystic Fibrosis, Osteogenesis Imperfecta, Musculur Dystrophy, and Dwarfism. From purely an evolutionary way, I understand Why people would want to erradicate these conditions  from the gene pool, but you can’t just separate these conditions from a person.

What really got to me, though, from what these so called friends of mine said, it was what I envisioned after reading those words.

Let’s say thirty years ago the more recognisable, easily detectable genetic conditions came up on an alert system during the first scan of a foetus, and doctors did force the mother to abort, and then sterilised her to ensure there was no risk of having to abort another baby. That’s a good portion of my childhood friends taken out of existence.

Let’s say they “allowed severely disabled children to die as nature intended” by not helping a child struggling to breathe, pump blood, stay warm, stay alive, after the initial diagnosis. Variant conditions like cerebal palsy, or just born too early, for example.

That’s most of my childhood friends taken out of existence.

And then there’s me, who didn’t flag up with a genetic condition at all. I wasn’t even diagnosed with a genetic condition until I was sixteen. What sort of childhood would I have had? Would there have even been a demand for special need’s schools? I couldn’t get into mainstream school, in reality, so I might have been forced into being homeschooled instead of attending a very empty special needs school in Liverpool. Would I have got even the mediocre education I got in reality, or would it be even worse?

But then if having a genetic condition was something to erradicate, would I have have been killed once they knew something was wrong with me at 6 months old? Would I have lived a life kept secret from everybody? If that was the case, I’d have died at 20 months old at most, with no doctor’s care or operation which, in reality, saved my life.

Or because they didn’t know it to be a genetic condition back then, let’s say I slipped through the radar up until I was 16 when my diagnosis got changed. I imagine I would have been friendless and lonely. I wouldn’t have grown up knowing my dear friend who passed away a few years ago, cos she’d have been forcibly aborted. I can’t imagine it being a happy childhood, my friends at school made my childhood good. The special needs bubble was my world.

And forget about all the way through secondary school and sixth form, this alternative reality is too far from my experiences for me to figure out how much different that part of my life would be. All I can say for sure is, in this alternative reality, I’d have been forced into even a lower standard of education and had not much point to thrive.

And then what would have happened to be when my diagnosis changed? Would I have been taken in or left alone? Best case scenario I can imagine, they’d leave me to suffer my condition getting worse and sterilise me just incase. Worst case scenario, I’d have to opt in for an operation somewhere along the line, and “complications” would arise which they wouldn’t save me from.

In as many as 800 words, their discussion changed the life I grew up with as I knew it. And this, this is what could happen if things carry on the way they’re going.

Two days later, Councillor Colin Brewer, who said disabled children should be put down, was back in the eye of the twitter media. There was a DNS artcle being retweeted about him, which basically outlined the fact that his apology before he resigned was worthless. He obviously  meant what he said, he even talked about how people had agreed with him!  He then compared disabled children to lame lambs. In fact, he used the graphical description of bashing a lamb’s head against a rock to put it out of it’s misery, and indirectly said that’s what we needed to do for disabled children.

It’s frightening. This is what people think? This is how people want to treat Human Beings? We have been down this road before, do we really want to repeat it?

But unlike my two friends, who masqueraded their opinion under the guise of it being better for the disabled child, and the parents, and future generations, this man just cared about the cost. Disabled people cost the government money, we’re a financial drain on society with apparently not much to offer, so we should be put down. Do you know what it’s like reading words like that?

Figures have shown that the elderly cost at least half the total amount of welfare paid out, by the way, with their pensions. Should we take a leaf out of Logan’s Run or Soylent Green, perhaps, and have people opt in to suicide programmes, just to save money?

If people get told their a burden so many times, they will feel like a burden and opt to kill themselves. They will feel like fighting is no longer worth it, and that everybody would be better off if they killed themselves. Their enjoyment of life will be sucked out of them.

Is this really the path our society wants to go down? Make people want to kill themselves to save a bit of money for the government, when the government have a lot more to answer to when it comes to ill-thought out spending sprees than somebody’s benefits and healthcare costs.

Which takes me to over the weekend. To add insult to injury, I wasted precious effort arguing with people about the bedroom tax, because a poor lady was pushed over the edge by it and commited suicide.

But apparently, because one factor isn’t normally responsible for someone killing themselves, despite it explicitly saying so in the lady’s note, it can’t possibly be the fault of the bedroom tax or the government. Especially when she was offered a house and turned it down, so obviously she caused all of her own problems!

My family were offered a house once. We had to turn it down and wait five more years to move, because the house they’d offered us had three steep steps (think a run-down, immensely smaller council house version of the houses in Baker Street) to get in, no way of getting a ramp put down because the ramp would have disrupted the path, the doorway was too narrow to get my wheelchair in anyway, the bathroom, according to family members who could get inside, was split level so that the toilet and sink were seperated by a step. The nearest bus stop was half an hour’s walk away, and none of the nearby shops were large enough to navigate in a wheelchair.

Those were the problems we were met with. It’s not a hard stretch to say this lady would have been faced with her own array of unsuitability issues. This is a lady who battled depression, who didn’t need the harrassment, the condesension and or the half-arsed solution. This lady felt alone, lonely, abandoned. Placing her out of the way of everyone she knew, making her start a brand new life, fork out money she didn’t have for a move she was not mentally well enough for, all would have been cruel. It is no wonder she felt like the best solution was to take her life out of the equation.

We should respect her suicide note as saying exactly how she felt: The bedroom tax pushed her over the edge.

I am fed up of the non-stop barrage of hatred spewed in the direction of people who need help and understanding. I’m fed up of arguing. I’m fed up of ignorant people.

But once again, if I’m not part of the argument, then I’m letting the ignorant people win without a fight.

But saying that, I think a few more days without a laptop crushing into my ribs, when my back’s already at it’s utmost unco-operative, would be good.