AFJ’s response: Fireworks.

Saturday 2 March, 2019

A couple of days ago, I became aware that Parliament is launching an enquiry into why, over the last few years, there have been a sudden increase of petitions from the general public asking for the government to create new, stricter laws in regards to fireworks. As the words on the webpage go on to say, the committee are asking for people’s views on the current laws on fireworks, and what needs to be considered when looking at changing the current laws on fireworks.

And on one hand, I’m grateful for someone elevating this issue, not just purely on fireworks, but also for noticing that so many people keep signing petitions, and each time are effectively fobbed off and patronised. The last time I signed one of these petitions, I was disgusted, yet not surprised, to find the response was basically “We don’t need to do anything more, because there are current laws in place that deal with the issues being addressed by this peititon”. So I do think it’s a good thing that someone is asking for our views further. The problem is, these views have been covered by every petition to date. Even in the webpage, they have listed what some of the reasons they’ve found on the petitions they’ve looked at, and still want people to contact them with their reasons, in their own words.

I feel like that’s slowing down the process they could already be making, and it’s putting responsibility on the general public. For example, I did eventually get an email about this, but I originally only even knew about the committee because my friend linked me. How many people would love a say and will miss out because the call for their input hasn’t reached them?

But, I have got the call and I will be sharing my views directly with them, using their contact form on that link. And I will say a better written version of the following:-

I’m afraid of loud noises. I don’t have any specific reason, i’ve just always been that way. And yes, admittedly, somehow during my teenage years I managed to supress my distressed reaction. Then late teens hit and I found I couldn’t suppress it anymore, then the twenties hit and I found every phobia I have is ten times worse than what it was in childhood. And it’s not just fireworks out in the wild, it’s also pyrotechnics at concerts, thunder storms, and even, depending on the tones, loud angry shouting and loud bangs in film.

But let’s focus on fireworks. My fear of the noises they produce means for a week before the 5th of november to the week after, and all through the christmas period to some weeks after January the 1st, I am caused significant distress, because the fireworks are available, and people will just set them off because they can.

I do my best to protect myself from the bangs of the fireworks, and I want to just make it clear here that this specific issues is literally just the loud bangs, if the pretty twinkly ones didn’t end in a loud explosion, I would be fine; But the problem is, they aren’t just silent twinkles, they are loud explosions, and they seem to be louder every year. That means a week of earphones in, loud music that drowns it out, from maybe 6 o’clock in the evening, to 2 o’clock in the morning,  hoping that no random bang from a firework will be set off outside of those hours, and what is set off isn’t so loud I can hear it over my music.

And I am not alone in these fears, and I feel many other people have a much better reason than I do for having these bad reactions. There are people with autism, there are war veterans who are triggered, there are people with non-autistic sensory issues, and then there’s the animals. And they are suffering. We shouldn’t have to live like this!

And that’s just the noise!

Around here in Liverpool, though I imagine it’s the same up and down the country, fireworks seem to go hand in hand with anti-social behaviour. If irresponsible kids aren’t setting off fireworks in the parks and fields, late at night to the early hours of the morning, anytime between September and January the 15th, they’re setting them off in the middle of the road in the direction of cars and buses. Just a couple of years ago, a firework was aimed at the side of the bus, reportedly so it would go in through the open doors, but luckily it went off course. They’re setting them off in random bins, with no care for what might fuel the fire in the bin and cause a spread to the building (which also happened here, right opposite my flat!) and they’re setting them off as pranks, and sometimes, they’re setting them off with the deliberate aim to hurt people. The response to the last petition talked about the laws, but let’s face it, the kids run off before the police get there, and the damage has already been done, and when do the kids ever get caught? If the bangs aren’t coming from somewhere definitive, how can the police even get there in time to catch them?

The current laws are not stopping the irresposible ownership or setting off of these fireworks,  they’re not helping after the fact if they’re not caught red handed, and how can the police catch anyone red handed when police numbers have been cut?

It’s just ignoring the key issue. These things wouldn’t happen if kids couldn’t get ahold of them in them in the first place, and I really believe they wouldn’t be able to get ahold of them, even illegally, if they only went direct from warehouses to organised public displays and pyrotechnic specialists thereof, and controlled via licenses. We understand a lack of access to guns means less gun-related accidents and crimes in the UK, why not with fireworks?

And, with public displays being the only way to celebrate occasions traditionally celebrated with fireworks, we need to go back to only celebrating on celebration nights. Yes I am aware of diwali and chinese new year, and I am including these too. It is not a human right to celebrate with fireworks, and maybe if more people go to displays, the prices of them would drop back down. It is not fair to those of us who can not tolerate the constant barrage of loud noises to put up with it for two weeks at a time. The other year, Bonfire Night seemed to be every night from the weekend before, and the weekend after, and New Years, the week before christmas and on and on and on. Even if you take in to consideration of irresponsible kids just setting them off whenever they like, you still have a lot of responsible adults thinking their right to buy fireworks from any supermarket and newsagents in their area, and their right to set them off in their own back garden, trumps the health and wellbeing of everyone else around them. It doesn’t. I honestly don’t care if the 5th falls on a Tuesday and people are too tired from work, I should not have to spend a fortnight dodging explosions coming from far beyond my home and neither should anyone else, nor animals who can’t understand what exactly is going on.

So, to summarise my feelings on fireworks, the noise levels of those explosions need to be brought down, firework purchasing should be only for license holders, those license holders need to be managers of public displays, and those public displays need to be scaled down to just the day of celebration. Any unlicensed use or ownership should be treated as a criminal offence, stronger than “antisocial behaviour” by the fact it’s literally someone setting off explosives.


Healthy Eating: A Failed Journalist goes Lifestyle Mag!

Wednesday 9 January, 2019

Remember my financial crisis, which led to tokens for free or dirt cheap food at fast food resuatarants, which made me put on weight? Well, I was trying to lose the weight I’d gained, which is very hard when you can’t really move without pain, and energy levels are almost all low, and all energy is needed to fight off the flu and get right back into the uni saddle to write a 1000 essay… holy run on sentence batman!

I don’t normally go for the whole new years resolution thing, or diets. Health issues notwithstanding, I find a lot of people make dieting too much about goal weight orientated instead of healthy living, and they want the weight off now now now. I can’t stand when food is considered “bad” or a person considered “naughty” for eating said “bad food”.

However….

However…

All of my hard work put in after the financial crisis:- cutting down on sugar. cutting down on big fast food meals when out on social calls, trying out chair exercises just to increase movement a bit – it was all undone by 10 days worth of family christmas meals and biscuits and chocolates. I don’t know how much I weigh, because it’s not like argos sells wheelchair accessible scales, but I was almost close to fitting into my favourite pair of jeans and now I’m not, again. So I think it’s safe to say, I’m back to square one.

I don’t know what I’m doing with blogging this. I’m not about to go all Take A Break on everyone and start talking slimfast shakes, but I feel like I’ll struggle to acknowledge my effort if I don’t blog about it here.

The problem I think I have, in comparison to other people I know on a New Year’s Resolution diet, which isn’t what I’m doing exactly but is close enough it might as well be; is that they’ve got something to start from. They either plan to cut out alchohol or ready meals or sweets, but my problem is I don’t drink any alcohol, I do need to depend on ready meals a lot because otherwise I wouldn’t eat any hot food on days my parents can’t make my food for me, and although I go through phases of eating sweets, sugar is hard to cut down on when you’re literally a CFS zombie without a kick of sugar half way through the day.

But, I start as I mean to go on. I have a lunch box for when I’m out of the house, an ice pack, and a love of fresh salad. I’ll be using a calory counter as I have been using for the past few months, and I guess I’ll figure out the exercise problem along the way, somehow.

I’ll now return you to your normal AFJ wordpress blogging.

-AFJ

 


I am not normal

Thursday 3 January, 2019

A few months ago, I wrote a post, which I locked, about how worried I was about the chance of being genetically normal. A few years ago, I was put in for a genetic map study because my rare undiagnosed condition had gone undiagnosed for too long. I was worried because I’ve had a few people in my life, at key times of my life, who have doubted that there was anything wrong with me at all. I was regularly dismissed as being an attention seeker and it’s taken me years to grate off the feeling that I am not disabled enough for help, not disabled enough to be disabled, that their outright and underhanded attitude towards me imprinted on me. I might have a terrible memory now, but I can still remember most, if not all, comments said to me that have hurt over the years, and I remember who said them and when they said them.

And I was worried about the results, because if it turned out I was genetically “Normal”, that would turn my identity upside down. I couldn’t think past the possibility of various conditions I’d come across and read up about, because there was always this chance that they hadn’t found any genetic reason for why my body is the way it is.

Well. I got the results and it’s taken me a while to write this entry, like five months nearly, but I am glad to say that I am not normal. Genetically speaking, i’m abnormal. To say I was relieved was an understatement.

I have a rare bone disorder, that is so rare that currently I am the 50th person to be diagnosed with it, in the whole wide world, and is currently the most severest and the most furthest advanced that my genetecist had seen. I’ve lived with this for over 30 years, in mystery and in doubt and in pain. I had surgery to physically correct my body’s abnormalities that the genetic fault cause, at a time we didn’t even have genetic mapping.

The faulty gene was only discovered and named a year and a bit ago, and it was only in April last year that it flagged up on my sample.

I know this sounds suspcious, but I don’t want to share the name with everyone just yet. I’m just glad I have a piece of paper that confirms what I’ve been saying all this time, that my joints rest badly on each other, and that the pain I’ve been suffering from is bone pain. I have a piece of paper that says it’s a collagen fault, randomly occuring within me. I have not caused this myself, and my parents didn’t cause it, and more importantly, the doctors didn’t cause this by operating willy nilly on me when I was a child, as one unhelpful person suggested. People paint the 80s and 90s as if it was full of mad scientists eager to operate and to change and to improve without a care to the consequences, but as having lived through it, I know for a fact that whilst my doctors did some radical things to save my life, and to improve it on subsequent operations, they were never a moment too soon. I remember the pain of being left to wait too well.

If I was to have children, I would pass it on to them. You can’t have it and not carry it, but you can have it without inheriting it.

Now that they have a name for it, and as the word spreads more doctors will know what to look for, I hope it means more people looking for answers, because they live in pain and the current diagnosis of arthritis or scoliosis and or post-operative complications or they’re attention seeking or it’s all in their head, get tested and diagnosed too.

I am not normal, and that’s the best news I had in 2018.

I don’t know what 2019 will bring but i’m not sure it will top cracking a 30+ year old mystery.

 


They giveth and they taketh away

Monday 19 November, 2018

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

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

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

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

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

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

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

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


Plastic Straws vs other plastics

Thursday 12 July, 2018

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

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

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

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

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

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

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

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

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

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


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Sunday 24 June, 2018

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How I Survived My Very Own Financial Crisis

Wednesday 16 May, 2018

Hello there. It’s been a while since I updated about something personal (Who am I trying to kid? Almost everything I write about is layered in personal) but lately I went through something and I feel like sharing about it.

It was just a spate of bad luck that all happened at once. My whole family was sick at the same time as daily living expenses went up, plus I had appointments I had to travel for, and then my beloved pet got sick so I ended up with vet bills, and paying for the taxis that got me and my beloved pet back and forth to the vets. We had, as the old advert went, “More money going out than what [we had] coming in”. It was stressful and it’s only now that things are beginning to level out.

So, how did we survive? Well we couldn’t do anything to bring more income in at that point. For the family members that work, days off sick on 0 hour contracts are days you’ll never get back unless the boss will give you more hours (they didn’t), and it’s not like you can get more ESA just because your heating bill has gone up whilst you’ve been sick over the winter. Personally, I scrimped and saved and became a bit of a Scrooge. I’m ashamed to admit that I noticed i was over charged 70p on a money saving multi-buy item because of a glitch and contacted Morrisons about it to get that 70p back. Even now the vice-like grip of impending destitution (Hi I’m A failed Journalist and I like Hyperbole) has eased, I’m still being as cheap as possible until I really feel like the danger has passed.

First was that any and all points on any loyalty cards were used. I’d saved up quite a few Morrisons points over the last year and a bit, enough to get a lot off the Christmas shopping and still had some money left over to build up on from the new year, not to mention some £10 vouchers for the delivery being late. So £10 a week off the weekly shop helped a lot. Same went for Sainsbury’s. I hardly ever shop in Sainsbury’s, but I have done my fair share of ebay purchases over the last 10 years, and points have built up which I’d never had opportunity or need to use before. Whilst family members who normally care for me were sick with the same flu I’d had, those points went a good way to helping me buy microwavable meals. Boots was another that I had accrued over 10+ years, and £13 covered a nice little Boots spree that’ll keep me going for a few months.

One of my Morale treats is Subway. I originally got addicted to Subway, and yes, addiction is accurate – back before I went to Uni the first time. I loved the smell of the place, I loved the way the bread toasted and the cheese melted, and the way the tang of the gerkin mixed with the sweetness of the BBQ sauce. There was nothing quite like Subway. Unfortunately their ableism became too much for me to handle so I stopped going there, until the last couple of years where the one by where we moved started begging me to go in. And even better, these days Subway has ramps! Not always suitable seating, but ramps, and a disabled toilet! And the staff don’t talk to me through the mostly soundproof glass! Well, these days my food allergies and intolerances have changed my diet a bit, but a nice chicken salad does me no harm. And even better, once you get enough points, you get a free sub! I had enough for one and was well on my way to a second when my Financial Crisis Hit. I got the free sub for a free lunch, and kind companions without their own cards or apps have been happy for me to have their points so I could get a second within a month.

The second method was vouchers. And I hope you note the problem is with all this discounted food. I have the Burger King app. At full whack, you can pay £5+ for a meal at Burger King, with the app vouchers it allowed the same meal cost £2.99. And then McDonalds brought out it’s Millionnaire Winners tokens. With my Unidays app I got a meal, with the token I got from that that I got a McChicken Wrap and Fries, with the Fries I got a cup of tea. I’ve been given unwanted tokens from Carers and Friends. I had five meals for free or under £2 thanks to those tokens

The problem is, I hope you’re starting to notice, is that most of this quick, easy, discounted and free food is all fast food and convenience food. But nobody is thrusting a free lettuce into my face that isn’t on a burger, and nobody is offering me a half price home made roast dinner, and I can’t look a gift horse in the mouth (I’ve heard it’s nice in lasagne).

I save on bus fair by wheeling where I can, when my carer’s can manage the walk. I’m sure if I could walk places or even self propel, I’d be burning off all the calories I’m getting from the fast food but alas, I’m fully electric. If Jeremy Corbyn fancies extending his free public transport idea to under 45s, I’d really welcome that, too! Carers don’t travel for free, you know!

I wouldn’t like to imply that there was even a good thing about this, because I’d go through bankruptcy if it meant he’d have had something treatable that I could have bought medication for. But it does mean no more emergency transport to the vet, and the electric bill  go down as

So that’s foods, toiletries and transport. What about hobbies and other daily stuff? Well, luckily for everyone, I already had enough hobby fodder in from bulk buying on sale two years ago. So that’s keeping me going. I’m on the cheapest phone tariff I can find. I’m using a free student trial of Amazon Video to keep up with film watching and I told NowTV I could no longer afford their services, so they kindly offered me the movie pass for half the price I was paying. That has now run out but it was nice whilst it lasted. I didn’t have any other subscription services other than Cinema Paradiso, which I cancelled back in February.

On a bizarre twist, I went further out of my area with my travel pass for a cheaper trip to the cinema. The disabled travel pass meant my train journey was free, the cinema is a short walk from the station, and the ticket itself was £5.75 with a free carer ticket, and I don’t bother with concessions on a normal day, so I definitely didn’t bother on my “keep the price as low as possible” kick. With my local cinema it’s almost £20 there and back in a taxi, and between £8 – £11 for a ticket. The only downside was that the wheelchair seat was way too close to the front so I won’t be repeating that money saving venture again!

I might have come across as a neurotic scrimping fiend the past few months, but all I can say to those that helped me and gave me their freebies, is that i’m grateful. Indulge me in my hyperbole here, but helping me keep things as cheap as possible kept the stress and the tears at bay. And, I’m relieved to say that the clouds do seem to be parting. Working members of the family have been back in work and back to normal for a few weeks now, prescription costs are back down to a more affordable level, and the weather is improving so some of the household bills are down. But the books balancing doesn’t mean the money’s stacking up, it just means for now, the waves are settling. There will always be water, and rain clouds can gather again to flood us out of house and home, and there’s not much I can do to build up a defence against it other than what I did this time; And next time, if I’m knocked off kilter again soon, I won’t have anywhere near as much of the safety net I’d incidentally created for myself.

Sorry, unsually for me, that’s all I’ve got. It’s hard to end this on a positive note.


Spring Cleaning Can Make You Money – As long as you had money to start with

Monday 16 April, 2018

There’s a history to Spring Cleaning, that I won’t go into because the history is long and I can only remember a small bit of it that I learnt from watching Ruth Goodman in Tales from the Green Valley, but it’s enshrined in western culture. When Spring eventually comes around, we dust the window ledges, we stack our cupboards a different way and we throw out the old curtains that did not survive yet another winter.

But lately, on the radio and on prime time TV shows for the masses, I’ve noticed there’s a bit of a fad about it this year. This happened a few years ago as well, around about the economic crash of 2008. The radio was full of top tips to make money on your unwanted goods, and the tv had shows about items you just happened to have in the attic being worth an unbelievable amount of money. This year, the fad is back and it seems to be tied to the fact we’re more conscious on the amount of household waste we produce.

In the last week alone I’ve listened to tips on how to get some of your money back from the clothes jamming up your wardrobe – Sell them to those clothing merchants you see on the high street (Cash4Clothes!), sell them back to the high street shops you bought them from (They named a place I’d never heard of, so I assume it’s expensive) or sell them on ebay or Gumtree as a joblot. If you’ve got gadgets you don’t use, sell them too! All this advice was intertwined with stories about some households who just threw things out instead of recycling, and landfills being filled with perfectly good clothes and accessories that could have gone to a good home if given the chance. Even worse, some items that say “this is not recyclable” could be recylable if you seperate the bits that aren’t recylable from the bits that are. You have to be conscious about everything you do. And I agree with that. As a minimalist on the verge of hoarding (I’ll get to that contradiction in a minute), I agree that what can be recycled, whether that means melted down and remade, or passed on to someone who could use it second hand, sent to a charity shop, or given to someone who can make something else entirely out of it- should be recycled. Unneccessary waste is wreaking havoc on our planet.

What I don’t agree with is this patronising tone it’s said in. Because it presents the idea that it’s the solution to clutter, without considering what causes the clutter in the first place, and even worse, without considering that the “make money off your unwanted shit” idea won’t benefit everyone. I’m coming at this from a personal angle. I had some unwanted clothes in my wardrobe. I recently went through my wardrobe and binned anything that couldn’t possibly be used by anyone else, and put what could be used by others in a bag for a charity shop (I have a threshold here, if they’re not fit for me to wear, they’re not fit for a charity shop).

The real problem is, is that my wardrobe is cluttered because I have very little space and I only have the necessities and some items I was given as  a gift. (Minimalist) But I had clothes that had holes in them, fraying at the seams, and the worst ones I threw out and I’ve kept some of the rest so long despite being in such a state because to me, they still serve their purpose and I can’t possibly throw them out (Hoarding tendencies) until they stop serving their purpose.

Some other advice was selling valuable jewellery, and gathering up any collectibles and finding a buyer of them to get the most money for these items. I don’t own any “valuable” jewellery that I’d be willing to part with, because the two items I do have mean a lot to me. I don’t own any collectibles, we’ve never had the space for them and my family have never inherited any from late relatives.

What I have are old clothing, some  20+ years old, some from charity shops, some from Primark, one or two items from New Look, a well worn pair of Jeans from Matalan, and a dress I bought for a wedding that will no doubt become The Wedding Dress (As in, the dress I’ll wear to people’s weddings, not my wedding dress… Although….). Nobody is going to want to buy these things off me when I am done with them. I will not make money from my unwanted goods, because the biggest reason for most of the things that are unwanted, is because I’ve worn them down. I’ve worn them down and worn them out. And that is the case for a lot of poor people, so this solution is being presented TO poor people to make some money off their stuff despite it not being practical advice for a lot of poor people. This solution also assumes that people are cramming items in because of an excess of items and a forgetful disposition, when these days it’s more a case of lack of space within the home.

Don’t get me wrong, if you can make money off spring cleaning, then all the luck to you. But you have to realise that in order for you to be making money off your unwanted, you have to have money in the first place to get them, or to store them somewhere where they’ve gone unused and untouched.


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.


12 Year Memorium

Monday 16 October, 2017

You and I have memories
Longer than the road that stretches out ahead.

1985 – 2005