Plastic Straws vs other plastics

Thursday 12 July, 2018

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

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

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

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

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

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

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

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

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

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

I don’t like getting the bus any more

Monday 22 January, 2018

First of all, hello, welcome to 2018. I hope it’s treating you better than 2017 did. For me, it isn’t, but that is something I am dealing with.

Today I want to talk about buses. My parents never had a car, and though I tried learning to drive and even passed the theory test (and that blasted Hazard Perception test), I never got as far as a practical test and getting my dream car. Now I have moments of wishing I had a car, but I have no plans of learning to drive again. So, I have a history with buses. My parents got the bus everywhere, they still do, and so I got the bus everywhere, and well I prefer trains but I still get the bus.

Here’s the problem. I don’t like getting buses anymore, and it’s completely related to being in a wheelchair.

Whenever I could go out, up to the point where I needed my wheelchair full time, I just hopped on the bus. Even on crutches, I hopped on the bus. My friend lived on a different bus route, so I hopped on the bus to one bus stop, got the bus to the bus stop nearest hers, popped in to see her Mum where she worked, and then went to my friend’s. It was brilliant. I thought I could go anywhere by bus, I just had to plan the route!

Where I used to live, the nearest bus to me was less than a 10 minute walk. I lived in a sort of set back cul-de-sac, and two roads away was the main road where the bus was on the corner. The worst part was always having to stand and wait for the bus, and then they brought in the worst most painful bus benches ever, but I still loved getting the bus. Even better, shortly before my Gran died, I got my disabled person’s bus pass that allowed me to travel for free, and she lived in a sort of set back cul de sac on the road opposite the bus stop, which happened to be the next bus stop down from my local bus stop. There was never any issue of me hopping on the bus at my bus stop, and getting off the next bus stop so many yards away outside my Gran’s.

Long journeys, where I was going end to end, I could sit there and listen to music and look out the windows. Short journeys, I tended to know at least one other person on the bus and they always ended up talking to me. Even when I started being a wheelchair user full time, in my manual wheelchair, given the bus drivers could be bothered to lower the ramps down, and even a bus turned up with a ramp in the first place, which let me tell you was hit and miss and on more than one occasion I would have to ring a taxi in a panic when the bus that should have had a ramp in fact turned up with a step with a pole in the middle and a bus driver that didn’t care and I needed to be somewhere in the 15 minutes it would have taken the bus to get me there, it was wonderful to hop on the bus, put my music on, and then get off at the other end. I was independent, I felt free.

The big difference is, the bus drivers who did lower the ramp did so as a  matter of course, I told the driver where I was getting off,  I could get in the wheelchair space nice and easily, the space was sideways so I could see where I was going, and then I rang the bell like any other passenger and then the driver would lower the ramp and i would get off. Like any other passenger.

Now, the freedom buses gave me just 10 years ago, feel like too much hassle for everyone involved Bus drivers have this attitude now – I don’t know if they mean to, but they do, like it’s a very big effort for them to put the ramp out. I can’t see it going down very well if i said my destination was the next bus stop 2 minutes away, like my Gran’s was. The wheelchair space is very difficult to get in to. There’s a bar in the way which means I have to overshoot the space and then reverse into it, the problem is they don’t give enough room to overshoot it, people have to stand up out of their seats to get just a few extra inches, and it’s a very tight fit to reverse and turn into the space. All because of that bar. And then I’m stuck going backwards. I hate going backwards, I can’t see where I’m going. There’s a chance the windows will be obstructed with advert vinyls. I can’t listen to music because these days I follow routes on my map app on my phone and I have to check between the phone and what I can see outside. It’s virtually impossible to go somewhere I’ve never been before in case, like the other day, my app stalls and leaves me clueless as to when the bus stop I need is coming up.

Also, it’s just very unnerving facing everyone else. Especially if something goes wrong with the bus they think is you’re fault – like an electrical failure after the driver’s lowered the bus to let you on – and double especially when you ring that bell. I refuse to ring the bell now. I get my carer to press the one nearest her and then she stands up and sort of blocks people from getting off so I can very obviously turn out of the space and the bus driver will be able to see I’m clearly wanting to get off at the stop he’s just pulled up to.

The bell, which just used to make the same “ding!” noise the other bells did, has had a few changes over the years. First it was a lower toned buzz noise. I didn’t mind that. It signalled it was the wheelchair user who wanted to get off, but it also didn’t alarm the other passengers when they heard a noise they weren’t used to. Then it sort of trilled, which I quite liked the noise of. Some passengers would look up in alarm but see it’s no big deal, it’s just I want to get off the bus. Now it’s an alarm. I mean it actually sounds like a school fire alarm. People look up in panic, and people don’t realise nothing is wrong, it’s just the noise the button makes at the wheelchair space when they want to get off. I’ve seen the stares of people who wonder what the hell I’m playing at, pressing an alarm. I’ve heard someone say “Is that normal? Is she okay?” to their seat neighbour when I’ve pressed that button. People look at me like I’m on fire, and look annoyed at the fact that I’m actually not. I don’t want to bring more attention to myself that I’ve already had from facing everyone’s direction, but I also always want to say “It’s okay! I’m not on fire, it’s just the noise the button nearest me makes! Please write to the bus company so that they change the noise back to the trilling noise, we all liked that one!”.

The ramps used to be shallower as well, or the buses used to be able to kneel more. Now the ramps are very steep, and there’s no traction. I don’t dare get the bus by myself even if i did know where I was going, because i need someone to hold on to my handles as I go down the ramp so that I don’t fall and tip. I get shrugged shoulders when I point out it’s very steep, pointed silences if I ask if they’ve knelt the bus, casual laughs as if it’s perfectly fine to almost fall off the side of the ramp because I’m coming off the bus onto the steep ramp at an angle and can’t straighten out in time, and jokes made at my expense making out that I can’t drive my wheelchair, when really, it’s because my wheelchair is susceptible to skidding, which it wouldn’t if I could meet the ramp head on and the ramp wasn’t that steep. And also, if there was better traction.

And then there’s the time it takes trying to convince parents that they need to vacate the wheelchair space so that the wheelchair user who has a legal right to that space could get on. Which is doubly annoying when there’s two spaces, one buggy and one wheelchair space, but the parent decided to park their buggy in the wheelchair space first anyway. It all used to be so quick and easy, and only the worst drivers refused to let a wheelchair user on, the most untrained drivers who refused to let a wheelchair user on. Now, it’s all of them who treat wheelchair users as if we take too much time to bother with, it’s everyone who would rather leave a wheelchair user out in the cold than do what their own parents did and fold the buggy before getting on in the first place.

It is every single part of getting the bus that has been made harder for wheelchair users, and if it wasn’t for the fact that sometimes, as in quite frequently, it’s the best mode of transport that can get me somewhere, I wouldn’t be using them at all.

And the sad thing is, if wheelchair users were involved in the design of buses, and trains, I doubt these problems would even exist. But we’re not, and things are not retroactively adapted when we point out a problem which really should be obvious at the design stage. When I was in University the first time, just as ramps were becoming slowly the norm, the one bus I could get on, it had a ramp but my wheelchair couldn’t fit down the aisle of the bus to get to the wheelchair space. I had one of the smallest adult wheelchairs you could get, and it was from the NHS so I had little choice in model. Most adult wheelchairs were 2 inches wider than the one I had, but the company’s response to my complaints didn’t change anything.

That was years ago, so I assume that situation improved eventually, but like here, I doubt it improved for long. I don’t know why the world is like this, I don’t know why people are like this, but it’s exhausting to deal with it and fight against it every single day.

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.

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…)

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.

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.