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.


The Benefit Changes of 1837 (AKA 2013)

Sunday 31 March, 2013

Before I get into this entry, I’d just like to apologise for how ineloquent this entry might be. It has taken me over a week to write, I’ve been tired due to a number of reasons and, well, ranting on and on about something doesn’t produce the most eloquent of entries anyway, does it?

So, yeah, if this entry is hard to follow, I apologise. But do try to stick with it, because it’s sort of important. And even if it isn’t important to you, it’s relevant to the right here and now of Britain, 2013.

So without further ado…

Tomorrow, Monday, The First of April, those of us on benefits will be become victims of the welfare reform implemented by the government and their minions. Well, they diplomatically call it a reform, I call it a cruel overhaul.

I know the government is short of money, and yes, there are people who are on benefits when they shouldn’t be and yes, the Government do need to do something about it.

But this overhaul is not the way to go.

The housing benefit and the bedroom tax, for example? Excuse me whilst I rant a second.

I know this doesn’t just affect disabled people, and I know that not all disabled people are affected but at least 60% of people affected by the bedroom tax are disabled. The government want disabled people (or families of disabled children) to either pay for a so called extra bedroom or move into smaller places. These are people in so called social accommodation. I personally believe in calling a spade a space, and you can call me old fashioned if you wish, but social accommodation to me is nothing more than a new term for council housing.

But there’s no councils involved directly any more, so it’s social accommodation to reflect how the houses are funded. But don’t let the fancy new term kid you. Houses built under the name of social accommodation are the same size as council houses, they’re as thoughtlessly laid out as council houses and the garden space is just as worryingly small as council houses. In fact, if I were to be completely honest with you, I’d say the houses built under the term of social accommodation are worse!

The new houses are made of this thin plaster board, so thin that there has to be wooden planks on the wall for people to put up curtain rails. There’s no place to hang photos, no wall mirrors, no clocks. Putting one directly into the plaster board could lead to a crumbling wall, especially during what they call the “resting period” after a new house has been built. For the record, the resting period of those houses was ten years.

The house I lived in wasn’t treated for damp, none of the new housing estates under this housing association was, which is essential with these new building materials, so we ended up with walls exposed to the elements and infested with damp the second year of living there. And just like the old council houses, the doors hardly fitted into the doorway frame, the bathrooms were badly designed and the kitchen was as small as possible. No storage space to boot, but no way to put up shelves either.

These are not houses you can turn into a loving home. And I’ve veered off the point.

My point was, these aren’t the highest standard of buildings and they seem to be getting worse. I was in desperate need of an accessible place to live, and this was the best they could provide. I don’t know what people think social accommodation housing is like these days, but I can tell them what it’s not, and it’s not a big mansion with a swimming room, sauna and room for a pony.

The tax payer is not paying for people to live in luxury, and just because someone is in receipt of benefits, it doesn’t mean they don’t also pay some form of taxes or that they’ve never paid taxes in their life.

And back to the bedroom tax!

The government want people even worse off than myself to move into smaller places. Where do the government think all these smaller accessible, affordable places are? And what they class as essential don’t seem to match up to what a disabled person might reasonably need. And that doesn’t even touch upon the point made many times on the news: A disabled person could probably need their own room.

Once again, it’s as if the attitude U-turn on disabled people has been used to justify heartless ignorance. After many years of arguing for our rights to be seen as worthy to be in relationships, our right to still be treated like humans if someone becomes disabled later on in life, we are suddenly having it thrown back in our face.

Just because disabled people are in relationships with all the trimmings found in a relationship, doesn’t mean that we automatically share bedrooms with those we are in relationships with. Yes, even married people.

Do you know how much room a hospital bed can take up? And yet the mattress are usually smaller than the normal single size. It’d be a tight squeeze for even the most cuddliest of couples.

And that’s if the disabled person doesn’t have to be hooked up to a bunch of machinery over night to keep them alive and well. Have you ever tried to share a bed with someone who might hurt you in the middle of the night due to spasms? Have you ever tried to share a bed with someone you might badly hurt just by accidentally knocking them in your sleep?

Do you know how noisy some of that machinery is? Do you know how important sleep is to a disabled or chronically ill person is? Sharing a bed with someone who tosses and turns at night wouldn’t just be annoyance it is for the majority of people, it could be life threatening!

And do you know how uncomfortable it is to sleep with your neck and shoulder at a strange angle to the rest of your body, just because the person your sharing a bed with has the head part of the hospital bed raised up so that their neck and head is supported in the only way it can comfortably be to them? Or with the knee break up, or on a full or half tilt to ensure blood pressure stays even? I don’t actually, because I am that person with their hospital bed head part up at an awkward angle for everyone else.

And then there’s just the fact that some partners can’t share a sleeping space because they need their own space to rest properly, and a restless partner, disabled or not, affects that.

I know it’s a trope on hospital dramas and in fictional romance stories, but honestly! There’s no room for an extra pillow, and if you can’t get that close and comfortable in a hospital bed to share one, you’re out of luck.

Hospital beds and hospital equipment take up too much space for two beds in the conservative measurements the housing associations class as bedrooms. If these couples, married or not, can’t share a bed, they need enough room for two beds in one room or a bedroom each. They can’t move into smaller property, that defeats the purpose of having enough space for a disabled person to live comfortably (and that’s comfortably, not luxuriously!) and bigger bedrooms mean less storage space. I know this because I’ve lived it and seen it!
And then there are the children! Not only are the government making children share despite a difference of gender up to the age of ten now, but they have no compassion for the disabled children who might need more space due to a disability, or other children who’s sleep might be affected by the demands of their sibling’s disability.

Do I need to go through all of what I’ve said above and apply it to children?

And children are children. At least by adults we should have grown out of tired-related tantrums. Tired children kept up all night by their siblings heart monitor won’t have yet have grown out of tired-related tantrums, and they will let everyone know it. Loudly. Probably keeping their sibling awake too.

But it’s the same in both situations. There are no exemptions, and so they are classed as being able to share, thus having extra bedrooms and being under occupancy.

The government seem to be forgetting that this is ultimately a change to deal with the issue of over-crowding. If two bedrooms are being used, they are not under-occupancy. And I’m sorry, but if they want to talk to someone about being under occupancy, they should look around the house of parliament and ask who has a second home! Never mind picking on the people who use a second bedroom, take those second homes and turn them into flats or something! Accessible flats, at that. Get those poor people who have had to turn their living room into their bedroom and bathroom because they’re no longer fit enough to use the whole house, and get them into an actual suitable property. That frees up a home.

And remind me to rant more about accessible flats in the future, because just saying “accessible flat” isn’t enough.

Most importantly, what I can’t get to make sense in my mind, is the fact that councils report there is an over-crowding problem and a lack of houses on the list. So why are they forcing people out of their homes if there’s no homes to move into? Or why don’t they search out the most over-crowded house holds and the most under-occupied house-holds and see about swapping them around?

Why are the poorest being kicked further when they’re already down?

Which brings me smoothly on the sister issue of the benefit caps.

The Government are reporting that there’s been an increase over the last ten years of people claiming disability benefits, and more people than ever before going straight onto benefits who’ve never worked. They can’t sustain at the rate they’re going, so things have to change.

Now, what they’re trying to imply is that, basically, we’re all scroungers. We’ve all heard that word before. Anyone who lives off benefits who could possibly work are scroungers and this generation is lazier than the last generation, and young disabled people are getting easily discouraged by the poor economy so they don’t try either.

Well… I don’t accept that. Call me naïve, but I think more people are claiming disability living allowance and employment and support allowance is because we have more disabled people.

It really is as simple as that.

The DWP maintain that the number of those found wrongfully claiming benefits stays under 3% of all claimers. So it’s not the scrounging society Cameron will have you believe.

More children are surviving birth defects, and they grow up to be disabled adults.

More children survive horrific accidents, and they grow up to be disabled adults.

More children are surviving illnesses and diseases which might leave them physically or mentally disabled, like meningitis for example, and they grow up to be disabled adults.

More babies who were born prematurely are surviving the critical hours in NICU, but not all of them come out from there with perfect health. Those babies who don’t grow to be sickly children, and if it’s something that doesn’t get better in childhood, then they become disabled adults.

Better medication and long-term treatment guarantees a longer life for those who would have otherwise died in childhood, like those suffering from Duchenne Muscular Dystrophy or Cystic Fibrosis. For the time they manage to survive, some of it will be as adults. Disabled adults.

There’s those people with severe forms of epilepsy, diabetes, asthma. Every day they survive on a gruelling regime of medications and assistance. It gets them to adulthood, it keeps them alive, but employment could be difficult.

And then there’s people who weren’t born disabled, but became disabled during childhood or adulthood. A serious illness, a tragic accident, or just a horrible twist of fate. I know the NHS is not the best, and it’s getting a hard time right now with everything in the news, but more people are surviving accidents, serious incidents, sudden illnesses, strokes, heart attacks, and things like that, due to medical intervention of the NHS. Some might come away from some of those things just as well as before, loads others don’t, and if they survive, they carry on their lives as disabled people.

Our population has grown, the ratio of disabled people to your average person has increased, therefore the amount of people on benefits have increased! It’s simple maths, and I say that as a dyscalculic!

Does David Cameron want us to go back to when people died of things we could otherwise save them from? Because that would sort his problem out. Depriving people of benefits they need to survive is just the heartless, long way around.

And all of this discussion about whether people should be awarded long-term benefits is ridiculous. Most disabilities are for life. You might outgrow an illness, you might outgrow a deficiency, but you hardly ever outgrow a disability, especially not without a lot of help at some time in your life and an ever present reminder for the rest of it; Some disabilities are temporary, someone might be temporarily blind, some people might be temporarily paralysed, but even then, they have to live their life as best as they can with that disability for as long as it affects them, and with those things, you can never tell.

Changing the system so everyone has to be re-assessed every year for their benefits just because a few slip through the system is unfair. And every single change to the assessment system makes it harder for genuine people who desperately need the benefits to get them, all the while the fraud percentage stays the same. Which is not, as the media and government will have you believe, over 10% of claims. It is less than 1%.

And that brings me smoothly on to the next change.

Now this one I’m not sure of the ins and outs of, so I’m keeping it vague. Free legal aid provided by the government to help with the appeals process is either being eradicated completely or substantially cut back. Do you know what that means? It means a lot of people, if not all, who get wrongly fined, sanctioned or kicked completely off their benefits and left to suffer in poverty, will not be able to fight the decision unless they can provide the funding to do so themselves.

I am very much happy to be corrected if I’m wrong on that one, but that’s what I can work out.

Other changes will see the CAB’s funding to help people with financial and legal problems lowered, also time and days to get access to the advice, and most centres turning into glorified call centres, with advice given solely over the phone. Hardship grants and loans will be next to impossible to apply for, so if anyone loses their job because they are no longer able to do it satisfactorily enough, and is left paying the bedroom tax because they either need that extra room for equipment, a separate sleeping space or just can’t move quick enough into a smaller property, they’ll be left to live off oxygen and whatever no frills food they can get off a food bank.

Then there’s Personal Independent Payment, which will replace DLA (not employment based, contrary to what the media will report). The new categories for PIP don’t reflect the true nature of a disability, and it makes it even harder for someone with a fluctuating condition or disability to fill in. They’re harder to answer and the point system is tougher, which might seem a good idea if you’re trying to get rid of those tricksy fraudsters leeching off the economy, but awful if you actually want disabled people to have access to society.

It’s like with every other form, but multiplied. Fill it in about a bad day and risk being accused of lying to get more money on a good day. Fill it in about about a good day and risk losing access to all elements of the fund, and for those on motability, that could mean losing their car, which might get them to work, to hospital appointments or to socialise, which if you’re unwell 99.9% of the time, is the one day you basically live for.

Take that away, and you will literally have a bunch of disabled people stuck at home, staring at the walls. You know, the very thing most people accuse disabled people of doing all the time anyway.

OH the irony!

And now they’re going to be joined with fully able-bodied people who have struggled to get jobs in this economy, because there’s not enough jobs in commutable areas. It was already difficult to get a job if you were over-qualified, and now we have a bunch of over-qualified people going for jobs irrelevant to the courses they went to university to get into. They’ll be joined by nurses who have been cut by the NHS, who funnily enough, could probably help a few of those disabled people get into work quicker if only there was enough staff care to go around on wards following patient recovery.

And they’ll all be joined by many, many other people who, by no fault of their own, have ended up on benefits. And the longer you’re out of work, the more difficult it is getting back into work, because industries frown on long stretches of unaccounted for time on your CV.

This is just a slippery slope where the poor are being hit again, and again, and again. And if you think that doesn’t take affect on people, think again. The worse a financial situation gets, the more likely it is that people fall victim to depression, and that not only puts more strain on the NHS, to treat the depression, it also will cause more delays in a person getting back into work. And the cycle will start all over again.

So thank you, David Cameron and his band of merry men for kicking the poor and disabled when they’re already down, stealing from them when they’re out, and feeding it to the rich once again when they have no hope of ever getting back up.

Ebineezer Scrooge called, he said you’ve gone too far.

This was a rant brought to you by me, A Failed Journalist. I can only apologise if it didn’t make much sense.


Cruel Irony, Much?

Friday 1 February, 2013

I’ve said before about the inaccessible “accessible bathrooms”, and the transport for disabled people that put cost effectiveness over usefulness of service, and now I have a new one to add to the list.

Up until recently, I was in the process of trying to get an electric wheelchair. It’s all more complicated in some ways than you can imagine, and simpler in some other ways than I could have hoped for.

In order to get an electric wheelchair, it’s standard procedure to have a Visual Field Test, just to prove that the potential user (in this case, me) has enough vision and peripheral awareness to be in control of a powered chair safely.

Failing the test means that a powered chair will be unsuitable. I know for a fact that I have freaky (in a good way) peripheral vision, and such good Crowd Awareness that it’s like a 6th sense. Unfortunately, I also struggle so much with depth perception, thanks to dyscalculia, that I ended up giving up driving lessons. Distance measurements meant nothing to me, I could never tell if a gap was too big or too small for the car so i always assumed it was too small, and it just generally made it difficult to get comfortable with driving.

Still, there’s a difference between driving a car and steering a wheelchair, one being a metal box surrounding you and protecting you, and the other one being a chair on wheels that leaves you open to the elements, so overall I wasn’t all that worried about the test… until I actually saw the machine they did the tests on.

It was a box, like a television, on top of a desk, and inside the box was an LED Board. The idea was to focus on the red light and when you see one of the LEDs flash, you press a button. You’re meant to sit right up close and rest your head on the cushioned rests so that you can see the whole LED box.

Well, the first problem was that there was no good height to get the box at, and there was no way to get my wheelchair or me closer to the box. Sitting up as straight as possible, my back still needs to be supported to the point of minor reclination, and after a few minutes any leaning forward I’dve managed to do, pain sets in so I’d have to sit right back so that my cushion could support me properly again, making the effort pointless and taxing.

This device was completely wheelchair inaccessible, and I had no way of sitting to meet it half way. The 10 minutes I’d tried to was a complete disaster. I could see the red light fine, and if the flashes were happening in the top half of the box, that was fine. But any flashes at the bottom of the LED board was blocked by the plastic casing around the “window”. And then the red light disappeared completely. The optician who was seeing to me (no pun intended) had to leave the room to get the optician of a higher level in the staff chain of command, because it was quite clear I was failing this test through reasons not related to what the test was meant to be testing for.

The optician was lovely, don’t get me wrong, and both of them did their best to accommodate me. He had the device off the desk and onto a computer chair, tried various heights of both the desk and the chair but it just wouldn’t do. Unless you can rest your head on the cushioned casing, most of the LED board is blocked by the very casing it’s enclosed in.

He apologised, and did a basic manual test instead, which I passed by the way, but I couldn’t help commenting on the irony of the whole situation, and the very fact that the device is not fit for purpose.

In other opticians and in hospitals, there’s probably better forms of the device used to carry out these tests. I just always seem to be in the wrong places to get to them. But once again, I can’t just be the only one this happens to, it just feels that way from other people’s responses.

I’m just lucky the Optician was sympathetic enough, and confident in his own abilities, to trust a basic manual test instead of voiding my form due to being unable to carry out the test. But then if that had happened, I’d have been well within my rights to complain.

Instead, I’m settling for a letter of suggestion to send to their head office. I might not be fond of making myself some sort of spokes person, but if I want to see changes happen, what else can I do?

It’s like I said last time, if I want to see changes happen, I have to help make them happen because very few people will do it off their own say so.

And in case anyone is wondering, I am now a card carrying member of the Electric Wheelchair Owner’s and Driver’s Club. Well, I would be if that club actually existed…


Getting on my Soapbox – Wait, where’s the ramp?

Tuesday 8 January, 2013

There’s many things that are annoying about being disabled. There’s the actual disability, the constant need for medication, the inevitable situation of being dependent on someone when you’re quite happy to be independent, the assessments, the doctors, the hospitals, the decisions between priorities and having to defend yourself against the masses because they live in wilful ignorance…

But there’s one thing about being disabled which annoys me, and the fact that it annoys me causes inner conflict within myself.

And it’s that, because I’m disabled, I’m automatically seen as some sort of expert on all disabilities and the issues everybody with a disability must face, and so it’s been left to me to educate everybody who lacks the knowledge.

On one hand, admittedly, I do know my stuff when it comes to demanding equal rights, wheelchair access, access to social care, and how various disabilities can negatively impact someone’s life style. I might know it because i live it, but I also know it because it’s bloody common sense.

On the other hand, because it is bloody common sense, I don’t see why I should have to spell it out for everyone else when so many issues should be obvious to everyone else.

When I was in 6th Form College, I did a course about the business side of the travel and tourism industry. It was always expected of me to bring up the disabled access and equal rights issue. Nobody else ever thought of it, nobody else gave it much attention. If the subject was brought to the table, everyone else would go “of course there should be disabled access” and never go into the specifics. Some people would even say “It’s a shame there’s no disabled access, but they can’t expect it everywhere…”

There are so many disabled people who turn into advocates for disabled rights. Most of us disabled people know that it’s because if we don’t do it, nobody else will. They’ll try, but they get things wrong.

I’ll give you a couple of examples.

At one of the local hospitals I attend, they had new wheelchair accessible bathrooms put in, because the old wheelchair accessible bathrooms didn’t have much room in them, making them rather pointless. They had two phases of assessment: One person going through all the common demands of access and declaring them reasonable, and then another person assessing the access from the view point as someone in a wheelchair.

Here’s why that didn’t work:

The first person looked at the bathrooms from a carer’s point of view:

Can I help the person in the wheelchair into the bathroom?

Can they safely sit on the toilet?

Can I help them safely get back into their wheelchairs?

Is there enough room for us both to wash our hands?

Are any of the bins/sink/dispensers in the way?

The second person, who was able bodied (The old “We got someone to go around in a wheelchair” palava) saw it from the view point of a perfectly able bodied person being helped by a carer, rather than someone with a disability. There is a distinction, there’s a very big difference and these aren’t taken into account properly.

The second example is frustrating. I’ll give you anecdotal evidence:

When I was trying to travel and needed a hotel, I had to ask every hotel and Bed and Breakfast about access, and most of them would say say “We’ve got good access, yeah!” which would be great if it was as easy as that. If you are ever travelling with a disabled person, or you’re disabled yourself, never take them at their face value. Always go into the specifics of what you might need and see if what they have will be good enough.

One place that was in the best location for the journey went on to say, “Yeah, we’ve got a two bed room downstairs and a wheelchair accessible bathroom. There’s a couple of steps outside, and the doorways are narrow, but we had one of the employees go around in a wheelchair, and he didn’t have no problems!” or words to that affect.”

I asked some more questions, and from what I can remember, the accessible bathroom was little more than a toilet with a lever-grip bar,  a low level sink, and for a shower, you could ask at reception for the shower stool. It didn’t sound wide enough for both a disabled person and their carer, nor did it sound wide enough for a wheelchair to fit, so I’m not exactly sure how they expected a disabled person, independent or not, be able to actually get in the shower. And shower stools are hit and miss when it comes to safety in the shower, as there are various shower stools and it depend’s on the range of mobility on if they’re a help or a dangerous hindrence.

Some people don’t have carers, because they don’t need carers. (I used to be one of these people.) Some people have complex disorders that affect range of mobility, grip and space perception, but still don’t need carers.

For someone with those kind of conditions, taking away the option to be independent is more disabling than the disability itself. Because it assumes a carer will be there to do all the hard work, when the disabled person would be able to do it all for themselves.

But this is derailing, and yet at the same time precisely my point.

As a disabled person, I just want to be a person who coincidentally has a disability. I don’t want to be looked upon as some sort of teaching disciple, telling everyone how wrong they are when it comes to these issues. Mainly because it’s a stereotype I don’t want to conform to, partly because even I might get it wrong. I am just one disabled person with one type of rare condition. What might be accessible or inaccessible to me might not be all that reasonable or unreasonable to others with different types of disabilities, conditions and impairments.

But, like I said, I’ve often found that if we don’t speak up and point out the problems, nobody else will.

I think the latest thing that got my goat, which is fairly obvious and common sense living with a disability, is hospital appointments and the need for a carer. I’m alright, I have my family, but it was a very real possibility some time last year that I’d need a carer assistant to go with me to my hospital appointments.

I asked the social services about that, and they said that the only way to gaurantee a carer on days of hospital appointments, would be to get assessed as needing a carer on a daily basis, and then cancelling the days where I don’t have hospital appointments.

It was all either/or, and no way to call up, say a week before the appointment, and ask whether I could have an extra call for this one off appointment. Now I have many hospital appointments, and a direct payment system, so not only does that system not sound too barmy, but also options have opened up a bit. But there’d still be the issue of accessing more money from social services to cover the call. Social care and home help isn’t cheap, after all.

But it just kind of baffled me. Why so black and white? There must be other people who only need a carer on a “as demanded” basis, rather than either scheduled time limited calls, or a full time carer.

Maybe there are, maybe they went to Direct Payments ages ago, and employed a PA directly for those very reasons. This could very well be another one of those things that they overlook due to their main demographic of clients and service users.

Which brings my point back around, really. People concentrate so often on issues disabled people face, from the outside view of not being disabled, or not having that particular disability. They often tell us what we need and what we want, and they don’t listen to common sense.

Which is why, begrudgingly, we need advocates and spokespeople to tell them they’re wrong.

And out of all the disabled loud mouths I know, I appear to be perfect for the job.

(Because I’m the only disabled loud mouth that I know personally…)


The End of 2012 – Wordle

Monday 31 December, 2012
And now we’ve come to the end of 2012.

This blog suffered this year, didn’t it? Well, art follows life, as I’ve just made up, and this art definitely followed this here life of the failed journalist. First there was the project that ran away with my time, then there was ill health. Then there was more ill health. Then the old SAD kicked in on top of ill health. And between the ill-health, the ill-health, SAD and everything else, it was just very hard to keep this blog afloat.Trust me, the last thing people need to read are my apathetic reviews and rants. And what’s a rant when it’s fuelled by apathy anyway? It’d be a contradiction, an oxymoron, a paradox! Apathy can’t fuel anything, that’s why it’s called apathy.

So anyway, it was a year long absence with bouts of focus in between. 2013 will be better! I said so on Christmas and I meant it. Because there’s a bunch of pre-written entries 😉

Anyway, on to Wordle. I loved the one from last year, it didn’t represent the blog much at all. I found out why after much googling. Apparently it just takes from the most recent entries, and last year that was a steady stream including the ones for asexuality awareness.
This year with a clever bit of fudging on my part, in which I mean I copied and pasted every single entry into a word document and copied and pasted that into the wordle text block, we have true blog representation! From the beginning.
And there we have it! People have been the focus of this blog up until now.
What will 2013 bring, I wonder?
Happy new year, people!
-AFJ-

Who are the April Fools? All Care, Mears or The Government?

Tuesday 3 April, 2012

I’m probably ruining the Anonymity I’d built for myself over the past Year and a Half on here by writing all of this. I’m also breaking my hiatus, but it’s important on both accounts.

As I’ve mentioned a few times, I have a disability that in the last two years has caused a large decline in my mobility. I came out of surgery twice a little bit worse off than before I went in. I use a manual wheelchair even though I can’t self propel, I can’t bend over or down, I can’t crouch, kneeling is now impossible. I can’t put my own shoes and socks on, I have difficulty getting dressed by myself everyday. If I was left to my own devices, I’d manage minimally for a few days and then it would be all too much and I’d be stuck bed bound for a week, in pain.

Having my mum as my carer lets me keep a nice middle line. I can do as much as I can for myself, because I have some one helping me do it. It’s a weird strategy, I know. Not everyone seems to understand it. They never did at school, that’s for sure. But that’s a limp down memory lane I’ll save for another day. Maybe.

Anyway, My mum takes care of me, which helps me take care of myself. But she can’t always do everything, though. She has her own disabilities and ever-lasting bouts of ill-health. Which is where, in my specific case, a care company comes in.

I need someone to help me get in and out of the shower safely, and help me get undressed and then dressed again. My mum could maybe manage it once a week, every 10 days. Any sooner than that and it was too soon for her to help me again. I tend to have appointments of some sort at least once a week, she has her own appointments too, and she gets tired more than me. Because she does the hard work. She is not up to helping me get a shower every so many days.

It’s not life or death, I know. And I understand there are many people out there going through the current predicament who are much worse off than I am. In their case, it could very well mean life or death.

And what is the current predicament? Well, it is as follows.

Just after the new year, the local care company that I’m with, All Care, lost it’s contract with the local council. The letters that were sent out informed All Care’s clients, rather half-arsedly I must say, about this and that we, the clients, would automatically be passed over to the new care company, Mears, come the first of April, unless we wanted to set up a Direct Payment Scheme.

The letter didn’t explain what a Direct Payment Scheme was, just implied it was a very messy and awkward thing to set up just to be able to stay with our current care providers. The letter also tried to assure the clients by saying words to the effect of “You will still see your usual carers”. Well, I picked at that straight away. because Mears is a completely different company. They weren’t merging, and one company wasn’t diluting to be the underlings of the other. They were remaining their own separate companies, with their own separate employees unless those employees wanted to move over.

From what I know of most of the carers that I’ve spoken to, most of them knew about as much as us clients as to their jobs, and most of them said that they would stay working with All Care as long as the position was there for them.

To cut a very long story short, I did everything I could personally do in my power between the social services and All Care to remain a client of All Care. I’m not alone in this attempt.

Mears rubbed me the wrong way as soon as I received their first letter, as it just assumed I’d be a client of theirs. Once again, the implication of setting up a Direct Payment to stay with All Care was a long and messy faff about, was thick amongst the tone of superiority.

I got a letter a week ago that said, “Unfortunately, due to exceeding demands for Direct Payments, not all requests were able to be processed in time. On the first of April, your care will be provided by Mears until Direct Payments could be set up.”

Now, I have three problems with this:
1) If the demand has exceeded expectations, then they should have met the excess requests with more man power

2) The fault lies solely on the shoulders of those in charge, yet it is me and other clients that are, for lack of a more general across the board term, suffering for it. We have our reasons for wanting to stay with our current care providers, yet some bigwig in an office is steam rolling over that.

3) All Care share some of the blame.

I’m not biased. I am willing to point the faults at whoever is at fault. All Care said that, from their end, they have a list of Clients whose care will not be affected by the change over, because the requests for Direct Payments have gone through. And then I found out a week before the First of April that it hadn’t.

I spent the whole of last week waking up to letters and phone calls trying to make sense of what was going on. I had Mears saying that unless I agreed to a care plan with them, my care package would be taken away and I would have to apply for one again via a social worker, like how I did when I was in hospital.

I had conversations with Adult Social Services that went like this:
Me: “I’m not happy about this.”
Them: “That’s not really my department. I can leave a message with whose department it is and they’ll get back to you.”

Followed by someone calling me up to tell me that they received the message. Then telling me it wasn’t their department and to call Department Number One again. Which is where I lost my temper, and my voice along with it. I mentioned what Mears said and they said they’d call me back.

Mears called me back and backtracked and told me that they Didn’t tell me my care package would be taken away, they were just concerned about me not getting care provided come the first of April.

I threw the words Harassed and Bullied at them and they said they wouldn’t be calling again. I got a letter in the post the next day saying that my care package would start on the first of April.

I had a few discussions with the owner of All Care too, and despite his assurance that I, along with others, would still receive care from them regardless, I got a letter the following day saying that come the first of April, my care would be provided by Mears. It’s out of their hands.

Well, I knew then that come Sunday, when a Carer was meant to turn up, nobody would be turning up. And that’s exactly what happened. My stupidity to blame for complete trust in one company? No. Because this mess could have all been sorted with some logical actions. But Logical Actions seemingly fell on deaf ears.

The most logical thing to have done, of course, would have been to have delayed the starting date of when the new care companies were to be taking over until all requests for Direct Payments had gone through and had been set up. That would have made everybody happy, instead of this big mess that has left almost everybody unhappy.

The worst thing about all this? It’s that we, the clients, were the ones who had to pass messages back and forth to make sure both sides were kept up to date on what was happening, and get information on what we needed to do next. Now, I have my wits about me and my head is firmly in place, hence why I was planning at one point to be a Journalist. But I’m not the average client of a care company. I am in the minority with my age, level of care I receive, and my mental awareness.

There are many, many elderly people who are dealing with the same thing. Some of their clients are people with varying degrees of dementia, they’ve had strokes, they rely on their relatives to keep these sort of affairs straight. They are unfit to deal with the complexity of this issue. It wouldn’t surprise me if some of them did say yes to Mears just to get it all over with.

If they’ve had the 10 days of hell I’ve had, then I hope members of the council and government wake up feeling very, very ashamed of themselves.

Even now I’m left feeling clueless and a little bit helpless. I was meant to call up the local MPs office today to put my name down on a list (A belated Petition, maybe?), as well as call back All Care and someone from the Adult Social Services. But, as a disabled person needs to do every now and again, I spent my whole morning in hospital seeing my specialist, and then spent two hours travelling back home. Then I suffered a migraine and that was me done for the day.

Whilst at the hospital, I received yet another letter from Adult Social Services, telling me to be assured that they’re doing all they can to transfer my care package to the new care company on the First of April. This was followed by the friendly information that, should I have any question or concerns, they will have offices open on the First of April that I could call. The First of April being a Sunday, the day before I received the letter.

It’s at this point I realized that Sunday was also April Fool’s Day. I usually have a good idea of what Cruel Irony is, but I’m not sure whether it is in this case or not.

Alas, if this was only one big elaborate April Fools Joke. Then it might all make sense.

Anyway. I also got a phone call from the very same department who tried to pass me onto another department, to talk Direct Payments, and I will have to call them tomorrow. Because this is a fine mess I seem to be involved in and the sooner it can be sorted the better.

One on hand, I wish I had have transferred over to Mears because then I wouldn’t have to put up with this constant headache and stream of letters that either all say the same thing, or contradict each other. But on the other hand, the council need to learn that they are dealing with people. People who have wishes and concerns and actual conditions that they’re no doubt making worse just for the sake of a few pence. If they just start making decisions that we all go along with because they’re the ones with money, then we will be taking a good step back in time where the disabled, elderly and the infirm are told what’s best for them.

I am disabled and I am an adult. I make my own decisions and I think I know what’s best for me. In the event that I can’t make decisions for myself, I trust my family and friends to do what’s right by me as I would do for myself. The government cost-cutting scheme and the council actually have very little to do with that part.

We don’t want to go down that slippery slope.

And if in the long run that leaves me weeks without a carer coming in to help me, well then I’ll deal with it. I’ve dealt with worse, and I’ll know who truly will be to blame for that.


A Crafty Failed Journalist is Crafty

Monday 27 February, 2012

When I was in Secondary School, I developed this thing I called The Procrastination Hierarchy. It’s where you start with what you need to be doing, and then start doing something else, and then you get bored with that, so then you do something else instead, and then when that gets frustrating or the horror of three commitments going on at once gets too much for your mind to handle, you do something completely different. It achieves many goals at once:

1) Working on those (many) other things you hadn’t yet got around to doing
2) Avoiding the work that needs to be done most urgently

This carries on until, eventually, you’ve wasted so much time that you have no choice but to get back to your original piece of work and finish it.

The lesser procrastinators will finish and hand in what would have ended up looking like the half-arsed, late-started product of an allnighter it actually was. Those of us who perfected this method would know that a deadline is the kick we need and the closer it approaches, the more intelligent we sound, the easier it is to make a load of bumph sound interesting and relevant, and the easier it is for our imagination to run wild with us, so the work doesn’t end up looking like a carbon copy of the research papers we’ve taken the information from originally.

It’s a side effect of the sleep deprivation.

I perfected this method in 6th Form. I, The Queen of Procrastination, didn’t just go further and further up my tasks list and tackle them one by one to avoid the previous task until I was so far from the original task my mind was refreshed. Oh no. I multi-tasked.

I had, and still have, a lot of ADHD-like tendencies when I was younger, and working on school work and course work was no different. So I would get all the work I needed to do, all of my unimportant things I needed to do and I would flit from one thing to the next until I’d whittle down the tasks. That way, I wasn’t completely avoiding the original urgently done piece, I was adding bits to it as I went between everything, meaning I had less to do when it came to the deadline of the other pieces of work.

It was all a double, if not triple, whammy.

From what I experienced, it also worked well for University too. But I can’t endorse this particular method, as I dropped out before I could draw any conclusions. Any problems I had with seeing to my work had more do with the failure of the course, the lack of provisions available to me, and my declining physical health.

And so, finally why am I mentioning this, you’re wondering…

Well, here’s the funny thing. I have things I really, really, really need to do. Like quite a few things, actually. I have a list of it all. And to stop myself from whiling the day away over on Livejournal, like I usually do, I’ve announced a Hiatus there. And because I’m looking for a distraction from the other things I’m doing whilst I’m not working on them, and because I can’t go back to Livejournal without declaring myself a failure, I thought I’d pop over here and work my way up to announcing a hiatus here as well.

And, well, now I have. And it comes with the gift of letting everyone in to my little secret! Well, it wasn’t really a secret. People knew about my Procrastination Skillz and Methodz, they just didn’t appreciate them.

I’ve learnt to accept that, though. They say genius is never really appreciated. Just look at poor Sherlock Holmes.

So, here I go, to work on my Very Important Projects. I’d like to thank the person who inspired me to kick my backside back in to gear, but I don’t want to name him by name. He doesn’t know me, it’d just be weird and I wouldn’t like to risk an awkward atmosphere should we ever meet.

We probably won’t, but it’s better safe than sorry.

So instead I’ll say this:

Watch This Space!


Another Dream That Never Came True

Monday 6 February, 2012

When I was about seven, I wanted to play the violin.

I’d always liked the sound of the violin, I liked the way they looked and I thought they were a lot more impressive than a guitar. Which is saying something, because I was pretty fascinated by my Dad’s guitar.

And even though I kept saying that I wanted to play the Violin, I think initially my Mum brushed it off as a flighting fancy. I was a hyperactive whirl wind of a child, and I couldn’t decide on what I wanted to be when I was older. I got bored with games quickly and I would flit from one thing to the other and back again to keep myself constantly entertained.

I’d be lying if I said I’d completely grown out of that now, but some of that still remains. I do constantly need something to do and I still flit from one thing to another.

Anyway, so, my Mum said no. She used to play the Violin when she was at school and she hated it. There were, of course, other reasons as to why she wouldn’t allow me to try and learn the violin.

First and foremost, they’re very expensive instruments and we were a very poor family. Some people say they’re poor and yet they can afford a car and the petrol costs on top. We couldn’t. We’ve never had a car, and if by some miracle we did, we wouldn’t have had the petrol money for it. We were really properly council housing and walking everywhere kind of poor.

So an expensive instrument I could potentially lose interest in? Not the wisest of investments. Expensive Instrument that would require expensive lessons to learn, in order to keep interest and motivation to play said instrument? A slightly better investment but even more out of our budget.

Of course, the biggest and most important reason my Mum had for not letting me have a violin, learn to play a violin, try and get some sort of really cheap deal going so that I could have a future in playing the voilin somewhat professionally so that the initial costs might pay off one day?

My disability. Which is why I can’t take it up now, even though I’d really like to.

Holding a violin for most children is awkward, but eventually bodies adapt, muscles build and tiring arms would stop being a problem. Between my back, my ill-proportioned body and my inability to sit comfortably on your average chair, it would have been a struggle to keep hold of a violin long enough to build up some sort of tolerance.

The older that I’ve got, the worse my body’s got. Sad, but true.

But I just wish I’d have gotten a chance to just try. I wish my primary school had had a violin in the instrument trolley, in amongst the rainsticks, xylophones, bongos, tambourines, triangles, maracas and other instruments that I don’t know the name of.

I remember being given a variety of instruments that needed to go on my knees, except they needed two hands to be played but I didn’t have a good way to sit on a chair that would have stopped the instrument from slipping out of place. I refused to play any wind instruments cos I was a germophobe, and I never saw them wash the mouth pieces. I didn’t even drink out of the same cup as my brother at home, I wasn’t going to share a musical instrument that had been emerged in someone else’s mouth.

So that left me with instruments I had to shake, twirl, spin or flick. Not exactly a set of instruments that you’d find a demand of in the Royal Philharmonic Orchestra.

And I listen to music today with violins in, in fact I go out of my way to buy violin-based music, and I’m just as mesmerised. And it takes me back to when I was seven and wanting a violin. I can’t help but feel cheated out of something.

At least I could play the guitar, had a shot of the drums and gave the keyboard a go. The Violin has always been out of my reach.

And of course people have turned around to me and said I should give the Violin a go anyway. I feel like these people are living in a dream-zone. I can’t spend £500 on a semi-decent instrument, a further £100 on what I’m led to believe would be a low-quality bow, and all the extra expenses of polishes, resins, cleaning materials, strings on top on a whim, to see how well, or how badly, I’d be able to cope in learning to try and play the violin.

The problem is this new polar opposite attitude some people have towards disabilities. It is the exact opposite situation to where we were all ignored and considered useless. No, this new attitude brings a blindness to disability in such a way it’s just as harmful, in the hands of the wrong people. So what if I have a back that collapsed and nerve damage down my right arm! Stephen Hawking has a form of Motor Neuron Disease and he’s still giving life a go!*

Yes, it’s all wonderful that people have faith in us disabled people these days to be on par with the rest of society, now that we have the Equal Opportunities Movement. There’s practically no good reason, in these people with these opinion’s minds, for anyone with a disability to not at least try.

Except sometimes disabilities do actually impose physical impossibilities and do actually hold us back in life, in some circumstances; and holding a violin well and truly comfortable enough to play one song probably is one of them. It would be a large waste of money, that quite frankly needs to go elsewhere, just to see.

And I’m out of any situation now that might land a free one in my lap for an hour, like a good school could have done. I could have even had a chance in high school had we been able to afford some sort of private music lessons. There were school-stock violins in the music cupboard, for people learning through the private music lessons but weren’t at an advanced stage enough to justify having their own (way-more-expensive-and-less-warped) instrument.

Ah, I’m feeling wistful. It’s all a shame, and it’s all very annoying. It would have been nice to try, that’s all.

 On the other hand, because I can’t bare to end this blog on a bad note (Oh no, was that a pun!?), maybe it is better to have never loved at all than to have loved and lost the knowledge and experience of holding a violin and actually playing it. Even badly. Like with my beloved Guitar.

*Something which has actually been said to me.


Sorkin Speculation: Revisited

Tuesday 24 January, 2012

On this date last year, I blogged about Aaron Sorkin’s news that he had written the pilot of a new show and was in the casting process. I then went on to speculate who might be casted into the show.

Well, since then, an explosion of new information came to light in the middle of December! There was nothing much beforehand, and nothing else since, but the information we now have, is enough to be going on with. Unfortunately, none of my speculated actors are on the cast list (yet) so I got that one (Or three, rather) wrong.

It’s exactly the premise Sorkin talked about on the news last year. Behind The Scenes Of A Show-within-a-show, like Sports Night and. to an extent, Studio 60 On The Sunset Strip.

Surprisingly, or at least it is to me anyway, Jeff Daniels, of all people, is the star of the show! He’ll be playing the Main Character, Will – Who is The Anchor of the News Show. So basically he’s the Casey, for fellow Sports Night Fan’s Comparisons. He does like to recycle those names, doesn’t he? Was there a Will in Studio 60? I don’t think there was, was there?

Well, you know what they say, where there’s a Will, there’s a way. Studio 60 didn’t have a Will, I don’t think, so that’s probably why it got cancelled. No Way for it to be successful. Such a shame, I loved that show!

Anyway. Alongside Jeff Daniels will be Emily Mortimer, who I first recognise as being from Disney’s The Kid, and then also from The 51st State. Jane Fonda is a bizarre casting choice but I’ll save my comments until after I see the show. She’ll be playing the CEO of the Parent Company. There’s also a few actors name’s that I don’t recognise and then one that I am more surprised to read about than I was with Jeff Daniels. Sam Waterston!

He’ll be playing President of the News Network, Charlie Skinner. I think that will make him the Isaac Jaffe of the show, under the power of Jane Fonda’s Luther Sachs, for a Sports Night Comparison.

I am very shocked but quite looking forward to seeing Sam Waterston in this latest Sorkin show. Sam Waterston seems like a very serious television actor, and Sorkin has this talent for making drama and subtle comedy blend together that I can’t actually imagine what this show is going to be like anymore. It not only speaks volumes of the quality Sorkin wishes to uphold with this show, but also what the Network Executives expect from him. You don’t just put Sam Waterston in a show that you expect to flop. And lets face it, Sorkin doesn’t have the best track records with these kind of shows.

I blame the Networks. Sorkin doesn’t have the best personality in the world but he knows how to make a show and how to get the best out of his cast. The Network’s never seem to know how to deal with the kind of outcomes they have to deal with when it comes to him.

But back to the show and Sam Waterston. Here’s why it’s especially delightful for me to see Sam Waterston in a Sorkin Show, other than it’s Sam Waterston and he’s a bloody good actor. He is James Waterston’s Father. James Waterston played Gerard Pitts in Dead Poets Society. Josh Charles, who played Dan Rydell in Sports Night, played Knox Overstreet in Dead Poets Society. And last but not least, an episode of The West Wing, called Two Cathedrals, had parts that were filmed at the same school Dead Poets Society was filmed.

My mind is just one Undirected Labelled Graph when it comes to Sorkin, Dead Poets Society and, though I haven’t mentioned it, House.

In Short, Sorkin is going to be working with the father of an actor, who worked on a film with another actor, whose biggest role since that film was probably Sport’s Night. Complicated and Simple at the same time.

Anyway, back to the show! It’s scheduled to start showing in the US in the summer of this here 2012. Only god knows when us Brits will get it. Right now, it has a preliminary 10 episode run and anymore will be down to test screenings and viewer ratings.

I really hope this hits the television like The West Wing. They were fools to cancel Sports Night and Studio 60, they had so much potential for a five year run each. I don’t think Sorkin could take another “failure” in that style.

Hopefully Sorkin has found a working line and is aiming for it, because as good as his shows are, they’re no good if they get cancelled due to communication problems with the networks.

A very small snippet of the show can be found in the HBO trailer for 2012 here and more information about the show in general can be found on it’s Wiki page here.

I really can not wait to see this show! Here’s hoping us Brits aren’t left waiting for too long after the US airdate!