Dear all artists and performers

Sunday 24 October, 2021

At the start of this pandemic, at the height, everyone had the opportunity, including you, to understand what disabled and chronically ill people live with every day. Stuck indoors, not enough money, no social contact, worried about bills, and worried about your mind going to pieces because routines can become relentless and boredom can be soul destroying.

You knew what it was like to be isolated.

And that was the reality for many of us already.

You suddenly understood what it was like not to be able to perform, maybe to even access a recording studio. There’s plenty of disabled talent out there that are literally only blocked because of physical access. You understood what it felt like only hearing people on the phone. You experienced not seeing anyone in person for days, weeks and months on end. You were suddenly experiencing being stuck, in one place, within the same four walls, for weeks on end, just like we dsabled people have for years.

You wanted audiences, you wanted to share your talent with everyone stuck at home. You wanted a sense of community and you wanted solidarity, and you wanted someone to say “We hear you, please keep going” and, also, you needed a way to make money.

And some of you figured out how to do streams and did free performances, some of you did ticketed events from your own home, living rooms, bedrooms, kitchens or basements, or even sheds.

But now the world has opened back up again, and you’re going back to venues. Venues which aren’t wheelchair accessible, venues which are in tick box excercises alone, and it’s like everything you learnt, everything that you had compassion and passion for during lockdown, during the height of the pandemic has vanished.

You can now perform on stage.

There’s still plenty of us who are sheilding because there’s still a pandemic out there than could kill us.

There’s still plenty of us who can’t go to in person gigs just because we’re bored at home. We can’t afford to, we don’t have the care hours, we don’t have the health.

And you have just shrugged your shoulders and gone on with your gigs.

We had universal access last year that everyone could use and appreciate, and now it’s gone. You have the power to keep that access in place.

We have people on the moon, we have watched rocket launches from our living rooms even; It can not be harder than rocket science to stream a concert online for those of us still stuck at home, for whatever reason, to watch.

In the last month alone, I have missed 3 concerts I’d have loved to have gone to, but couldn’t. Because now it’s just the likes of me stuck at home, we don’t matter.

And that actually hurts. It’s unfair, legally and morally, but also it just plain old hurts.

Do better.

AFJ


Going on with you gone still upsets me

Saturday 16 October, 2021

You get older… And your friend doesn’t

You change… And your friend doesn’t

The world changes and you don’t have your friend with you to get through it with you.

And as you change and the world changes around you, you think would you even be friends today? Would they like who you’ve become? Would you like them? How would them still being here influence you and how you are as a person?

Would they be married by now? Would their relationship, their work, their whatever obligation have made you drift apart?

What would they say to your failed degree and restart and deferrals and health?

And then you think…. If they didn’t die when they did, would something else have got them far too soon anyway? Would there have been an accident? Some other sickness? We’re all told we could be hit by a bus tomorrow, maybe they would have been.

You struggle to remember the layouts of their room. What did they have on that second shelf underneath the TV? Was it three steps before the bird cage or four? Did she put up the white poster first and then the black over it or was it the other way around?

Was it the peppermint she preferred or the spearmint?

Her voice has long gone from your memory bank but you would give anything to hear it again. Just a hello, or an admonishmemt… Because you bought the wrong mints again.

You’ve run out of the patience to think through the same old fond memories, and you can’t face the sad ones. The wasted time ones. The arguments and the bad days. The last days ones.

But there’s no other kind, because you kept living and your friend didn’t.

She should have had her whole life ahead of her and I do, and quite often I don’t want it.


Is silence really golden?

Monday 4 October, 2021

It happened again the other week. “It” being that I was listening to one Absolute station and a song that makes me ugly cry and have an existential crisis came on, so I turned over to the other Absolute radio station I listen to, got back in to bed, pulled the duvet up and lied down, only for another song that makes me ugly cry and have an existential crisis to come on just seconds after the duvet was up to my neck.

It might have been The Living Years on Absolute 80s, then Johnny Cash’s version of Hurt, or the other way around. It’s usually them by themselves that prompt one switch over. Sometimes it’s Queen The Show Must Go On, or Queen’s Who Wants To Live Forever, but this was the second time it happened with two of them on within minutes of each other on their respective stations, and last time I turned to Radio City, which was a risk too because the first time I turned to Radio City after The Living Years came on Absolute 80s, Heroes by Alesso came on within minutes of tuning in. That was played at my friend’s funeral, it too makes me ugly cry and have an existential crisis…

And last time I listened to Radio City as my third option, I spent about half an hour listening to the songs that were big when I was in my teenage years, in a time slot being called “retro hour”.

I didn’t want to repeat either of those things, so I turned my radio off completely.

I hardly ever turn my radio off completely. It is a real physical faff to turn my radio off completely so even if I’m in bed watching trash television (Kitchen Nightmares), the radio will be on and I’ll block it out with Gordon Ramsay’s swearing. I’ve almost always had radio, or music, on in the background. I usually struggle without it. I’ve done coursework with songs on repeat, been seriously ill with radio 4 helping me cling on as the hours pass by. I even heard an interview with Ceelo Green through the hospital’s bedside radio whilst I had an unpleasant procedure done because silence would have been worse. I haven’t slept without music/radio unless I have absolutely had no choice to, since I was 8, when I was given a digital radio alarm.

The only non unavoidable time I’ve chosen to turn my radio off is when I’ve listened to an audiobook.

I even went the entire time I was at uni the first time, without live television, and was just happy with the radio. People really think (or at least used to, I don’t know anymore, nobody shares their opinions with me…) I would struggle without a television, but as long as I had a radio, I would be fine. I was fine!

It took me ten days this time to put it back on. It’s been almost silent in my room for all this time, and I haven’t cared. No news, no hourly update helping me keep track of the time, no Bush and Richie to distract me from whatever I’m doing. Nothing.

I’m lying here again, right now, in almost silence, and I’m just not bothered.

I’m not sure what this means. It doesn’t feel good?


Time to try something new?

Wednesday 29 September, 2021

There’s a thing in the chronically ill/disabled community where people who are not chronically ill or disabled or neurodivergent will tell people who are, that the language they use for themselves is incorrect and/or insulting. Disabled, Deaf/deaf, autistic, dwarf, disfigured, chronically ill, mentally ill.

And so people of the ci/disabled community have started to ask “who told you that?”. Because usually the answer will be someone else who is Not (Workplace training officer), who was told by someone who is Not (Council worker), who was informed by a handbook from a government advisory group made up of those who are Not (MPs, Governors, administrators), instead of a variety of people. Or one or two disabled people who are suffering from internalised ableism which aligns with the narrative might be involvd, but they are usually anti disabled and pro cure.

They are all people with a specific narrative for a specific reason rather than for the good of society on a whole. For example:- You don’t have to pay people benefits for being too disabled to work if you get rid of the concept of disability and replace it with a set of deeply sensed personal failings which the person should just find some way of working around.

So I’m just thinking.

Maybe next time someone says something like “Queer is a slur” or “asexuals don’t belong in the LGBTQ+ community”, instead of trying to counter their opinion with facts and sources, like we have been doing the past five years, just ask who told them that first, then go on to present the facts and sources.

If they understand where the exclusionary and harmful opinions came from, they might just start to accept that they’ve been told wrong and will change their opinion, and take in the information and read through to the cited sources.

Just an idea.


I’m UnSmarting my Phone.

Tuesday 10 August, 2021

Like I mentioned in this post, my Smart Phone’s battery was (still is) dying again, the volume keeps dropping leading to me missing phone calls. Now the microphone seems to have gone as nobody who calls me/I call can hear me. I’m charging my phone twice a day even if it’s sitting there idling on my bedside table all day, incase someone important calls as nobody is ringing the landline these days, for reasons I can’t get down to. I charge it three days on “heavy use” days, by which I mean someone calls and I speak for about an hour, or I dare to go out, now that I have a carer, and I dare to use the camera.

The battery health says 92%. I think it’s lower but the phone doesn’t realise it. I can’t be bothered to go through the process to have it checked because their diagnostics tool depend on you using your phone, but then the Apple Tech guy got annoyed at me when switching apps apps to download the diagnostics app disconnected his remote link and he coudln’t start the diagnostics when it finally downloaded. Last time the battery said 90% but the diagnostics said 85 or 86%.. I imagine it’s about the same now, if not worse because it does feel worse with less use.

I could buy a new smart phone, except most on the market are too big for my hands. I’m swearing off future apple products because of this battery issue. They are expensive and the makers create problems so that you spend more money, like remove the audiojack to force you to buy either airpods or an adaptor if you don’t want airpods.

I’m fed up. I’m done. I honestly don’t know why I’ve put up with it this long in the first place. I say that someone who understands my “internet addiction” is actually my need for constant mental stimulation and the ability to flit between tasks seemlessly without physical strain on my body, but my phone’s main purpose is anything but a phone these days, and since I’ve bought the tablet, the smart functions on the phone are unneccessary. Which means this phone is unneccessary. Because whilst there might be important phone calls from social workers or care agencies or the doctors, I’m not getting many social phone calls from other people these days. There’s apps for that I use my tablet for, I guess, but people have just stopped reaching out to me. Which… is fine, I suppose. We’re all going through our own things and honestly, i’m just so tired anyway that even days when people do call, I’ll have a burst of energy to get through the phone call and drop straight after… or i’m just downright faking the energy and then reaping what I sow later.

So I’ve gone and bought myself an UnSmart nokia.

I’m going 2003, baby! This phone does not have Apps. It can’t do google or websearches or QR codes – which is only worrying in relation to Covid, but there’s still paper alternatives available which I’m happy to have to use. For music, I’ve inherited my mum’s ipod. For pictures, I’ll actually start using my very nice camera again, and in the case of hospital days, i’ll hopefully have my kindle too (5th Gen, still significantly lighter than my tablet) but that’s also been a bit temporamental the last few years so I might need to either upload an audiobook on the iPod or take the tablet. The poor little 5th Gen Kindle switches off if I have the audacity to flick through pages a bit too quickly! So… it might go kaput on me for good in the next year, but it’s still hanging in there. Yay!

This phone rings out, and people can ring it, it can do texts. It has Snake.

The one downside? Bloody T9 pad. I’m a quick texter, everytime i type on a T9 pad it all comes back to me, but it’s still so bloody tedious. But unfortunately a QWERTY keyboard on a UnSmart phone that works with today’s Sim Cards does not currently exist. I didn’t want to buy an old old old phone only to find the sim card was not compativle because it’s no longer 2001.

Watch this space! In 6 months I’ll either have regretted this decision terribly and crawled back to Apple because their iPhone Minis at least fit my hand span, or have found a new way of life with my nokia.


Inside i’m screaming

Monday 12 July, 2021

Ever feel like you’re the only person who can see the meteor coming towards earth and everyone around you is either severely blind with no vision or too busy dancing to the next biggest absolute belter of a tune to LOOK UP AND SEE IT whilst they’re telling you that everything is fine? But they’re NOT LOOKING UP.

Because holy shit, our infection rates are going up, the DEATH rate is going up, people who are double jabbed are dying of the Delta variant, there’s been a case and death of Lamda variant, and everyone’s just screaming that the 19th of July will be freedom day because they’ll no longer be legally required to wear masks.

Am I ever going to leave the house again without the risk of catching, spreading, potentially dying or being left severely harmed ny a deadly virus!?

If this virus just infected those idiots who didn’t care about others, well, so be it. But for every one person screaming it’s their right not to wear a mask, if they catch it, they infect 3 people and so on and so forth, and that’s how mutations happen.


I don’t think you know how Dial-a-ride works

Saturday 8 May, 2021

This post was originally written in 2017. I left it on To Be Edited, and then never got around to it. Posting it now. Keep in mind I only used the local Dial-A-Ride service a handful of times before my wheelchair was broke in 2019, and we’ve been dealing with the pandemic since early 2020. So if the service is different now, I’ve not had the pleasure to experience it yet.

I’ve had to go back to my local dial-a-ride service. I left them because of a multitude of reasons but them accusing me of lying after months of frustration due to poor service, was the straw that broke the camels back.

I’ve had a good four years without them, but in those four years, I’ve seen local transport and taxi service rise and now fall. We are going backwards in access and public attitude and it’s becoming harder, and more expensive, to get anywhere. But, when you look on social media or even hellsites such as Mumsnet, any complaints about poor access to public transport is always met with the patronising suggestion of using Dial-a-ride. Now this is yet another postcode-lottery dependent service, and I myself am ignorant as to whether every area has one or not or had one and lost it recently due to cuts. All I know is, what the service is, is probably nothing what these people imagine it to be.

I have vague memories of writing about this before, but I’m going to summarise again instead of directing people to an old post (because I’m too lazy to find it). You, the user, ring up between 7 and 2 days in advance of when you want to travel. You tell them the time you want to be picked up to go, and the time you want to return. You can travel any time after 8am but your return time has to get you home before 11pm. They ring you up anytime up to the day before you booked to confirm your journey details, and usually offer you an alternative time to the times you booked becuase they have to accommodate other people along the route.

I tried to book a pick up journey at 6:15 and a pick up at 10:30. Straight away I was told that would be too late. Even though all the information for the service says I can book as late as I want to as long as it allows to be dropped home before 11, I was then told by the person I spoke to the cut off time is actually 10pm. But also, they can turn up half an hour either side of that time on the day, so it could have worked in my favour that the driver would arrive for me at half 10… it could also work against me and pick me up a whole hour earlier than I’d like, at half 9. Oh, and I could be on the bus a whole hour between pick up and drop off.

I then got a phone call today to say that my pick up at home would be quarter past 5, which in fact could be as early as quarter to five, and get me to my destination way too early even if I was on board for the full hour. The latest they could offer me for pick up time for the return journey was 8 o’clock, I can’t do the maths on that but that would mean leaving an hour after the gathering of my friends would start, and they stay to midnight. I’m used to missing out some time because of my own health, but leaving before my health dictates is not on, just because the service is not fit for purpose.

But this is what able bodied people suggest we use, just because they do not want to share public services with disabled people.

I wonder what fuss they would kick up if they were told they had to travel half an hour earlier than they needed to, they would have leave two and a half hours early, and they could be on the bus any length time of time between twenty minutes to an hour. I highly doubt they’d just shrug their shoulders and accept it, because no one would want to travel this way! Nobody tries to fulfil social plans by going to train stations or bus stops without knowing what time the train or bus will turn up, or how long their journey is, what route they’re taking, or what time the last bus back is, especially if the last bus back means leaving an hour after the social event starts! It’s ludicrous!

But that’s Dial A Ride. And considering the only service users are disabled poeple, and many disabled poeple have care packages with carers on a time limit, it is really not fit for purpose. It is insulting that able bodied people keep toting it out like it’s a free premium taxi service. They really do not a have bloody clue.


AFJ vs End of Lockdown

Sunday 18 April, 2021

People are starting to ask me, in a very sarcastic and unkind way, if I’ll ever leave my flat again. As if the problem is me in this pandemic. The honest answer to the earnest question is, I don’t know. But this is not really the question, and not how to frame it even if it was.

The question is, can I trust people to not infect me with a deadly virus if I was to leave my flat ever again? And the answer is no.

People keep ignoring the fact that they are an important part of how this virus spreads, and has spread, over the past year. This isn’t a disease that spontaneously occurs in a person, like a cancer, it’s a virus, spread by the actions and inactions of the people. I’ve said many times now, countless, probably a thousand, that if I get sick, it won’t be because of anything I’ll have done to catch it, it will be because someone has passed it to me in wilful ignorance or arrogance. How can I trust the person on the street is not one of these people?

We’ve got anti maskers in their thousands who think their right not to wear a peace of cloth on their face trumps other people’s rights not to contract a deadly virus that, even if they survive, are likely to be left with irrepairable damage. They say to us who are at the highest risk of dying from it, or being left with damaged organs, blood clotting disorders, that if we’re so afraid of the virus, we can just stay home whilst they enjoy their freedom. They are the ones who are a literal danger to society, with the potential to spread and infect many people, which would lead to deaths, but it’s us that should stay out of their way?

Before anti-maskers, there were anti-vaxxers and these are the same set of people, and going by some of their social media accounts, they also love to flout social distancing rules to rub it in other poeple’s faces how much they don’t care.

So yeah, no I don’t feel safe going out, because these people could literally infect me.

I don’t understand why that’s a rdiculous notion or a controvercial concept or some sort of emotional/maturity failing. It’s not paranoia if there’s still a deadly virus being transmitted in the local community that could still kill me or the family I live with, or leave us permanently suffering from organ failure and seriously ill health.


Last week I left the flat for the first time in a year and a week

Tuesday 30 March, 2021

I honestly felt like I was never going to leave the flat ever again, and actually after last Thursday, it’s still a worry…

Nothing to do with Thursday, but last week was a bit of a bad week. Not sure what caused the flare up but my hips swelled up, then possibly the way I had to walk and sit to lessen the pain and discomfort from that caused pain in my back and neck, which forced me into lying down flat for a while until it all sorted itself out. Then I got a migraine. So Sunday and Monday were pretty bad. I was taking my full doses of cocodamol, which then kicked off my chronic acid reflux and even on esomeprazole and top up gaviscone, I was still choking on acid reflux asit continued to splash up my throat.

Such a glamorous life of a chronically sick and disabled person I lead.

But, Thursday was the day of 3 weeks since my jab. Which, it goes without saying, I did clearly survive. So, I’d already made a plan to go out and enjoy the nearby country side.

Thanks to waking up choking on acid reflux twice, I got less than 3 hours sleep. I actaully thought, you know what? I’m going to go the whole hog. First time outside of the house, properly, in a year and a day? I’m gonna dress nice! I’m gonna even put on make up! And if you know me, then you know that’s a very big deal because I only wear make up for weddings and really nice days out at the theatre with my friend, or I look very very sick and actually care enough to Not want people to think I’m diseased. And, given it was meant to be a sunny day, I thought “and the Sun Protection Factor on the foundation will come in handy.”

I woke up on Thursday feeling like crap and could not be arsed with the make up, so I didn’t. I did wear one of my nice Tshirts though, underneath my hoodie. And it was one of those awkward weather days where it was a bit too cold not to wear a coat, but absolutely boiling with a coat, so I thought, I haven’t actually felt a nice cool breeze on me in a very long time, so I’ll just wear a hoodie.

And then we went outside to the local nature park. We wore masks from before we even left the house, as per the SCIENCE. We passed 33 people during the whole hour we were out, only 2 of them were wearing masks, and they were carers inside of a car. It might be “safer” outside, but the air droplets of this virus do still linger in the air. Just because the government say you must wear a mask inside shops and enclosed spaces doesn’t mean you shouldn’t also be wearing masks when just outside.

Seconds after we got to the park, we got passed by 5 fellas on bicycles, none of whom we wearing masks.

I wanted to come home immediately. I just had to keep reminding myself that they were in each other’s company far longer than they were in mine, so more likely to get each other sick than me. Which is terrible, but no less true. But also, on the other side of the same coin, they must trust each other implicitly to take that risk with each other’s health, so if they could trust each other not to infect each other with the virus, then I could, potentially, also trust them not to infect me.

It just keeps coming back to not knowing whether I can trust everyone else is taking the pandemic seriously, taking the risk to their own health seriously, the risk to other people’s seriously, and that they understand what asymptomatic transmission means. Given what I’ve seen on the news and on social media, and even some friends, it’s a resounding no.

But I persevered. I was somewhat amazed and also somewhat dissappointed by the park looking the same as it usually does. The grass was still all there, there were no dystopian towers suddenly built in any of the fields, the pavements were all the sme, but I got wonderful fresh air (through a mask), and I was surrounded by greenery and some flowers. You can’t ask for more from a walk in the park!

Oh, we saw police horses! That was nice.

We also saw a whole group of people taking up over half the path and they could have gone single file like we were doing, but they didn’t. Which is just rude in normal circumstances, but violates the neccessary social distancing required during a pandemic. I mean, come ON people!

End of the line for the park, we turned around and came back. Which was good timing really because it was starting to go from “refreshingly cool breeze” to actually shivveringly cold.

Despite the bad morning and not feeling very well when we left the flat, I did actually feel better in a different way when we got back. My hips and knees didn’t feel like they were sitting in their sockets the right way, but I felt like I’d earned the tiredness I felt. The thing about chronic fatigue syndrome is that you can feel drained and tired but not feel sleepy, and you can go from being lively awake to feeling sickeningly overwhelmed very quickly. And, it’s always a risk when doing something new, or for the first time in a while, to feel sickeningly overwhelmed, almost as if you’re about to suffer a massive migraine that doesn’t quite come. It just happened that this time, I felt refreshinly tired which led to sleepy. So, after dinner, I fortified myself with some gaviscone and went for a kip.

I woke up a few hours later with my forehead all red. What could have possibly caused that!?

Oh yeah. The sun. Because when I sacked off putting make up on, I then didn’t bother with sun cream in it’s stead. I’ve been putting After Sun on my face twice a day ever since, hoping the red and dry skin will clear up to a slightly brown tan at some point. It usually happens. It’s not happening this time, though.

Maybe my skin’s forgotten what it needs to do after all this time of being indoors.

I don’t plan on going out again until after the second dose, now. The good thing about going out on Thursday, waiting 3 weeks until the first dose had reached it’s peak, was that it was likely to be other people braving the outdoors and elderly people already vaccinated (because, I don’t know if you remember, but shielders were actually advised to not even risk going out for exercise like other poeple were allowed to do). Now Johnson’s opening the country back up, I can anticipate the pavement situation being worse.

I sometimes have a good view of buses going by the window. I saw one a couple of hours ago with a lot of people on, despite bus companies saying they’ve lowered capacity, and the government saying still to only use public transport if your journey is necessary. (Which conflicts their over all message of return to your offices, filthy scroungers who don’t want to pay for commuter coffee or lunch break sandwiches from the expensive coffee shop near your work! I can understand why peopel are confused…)

Ultimately, I just don’t think it’ll be as safe it was, for me, to go out again until I am fully vaccinated. So that’ll be in two months.

I wonder what the outside will look like then! Dystopian tower, barren land, or depressingly the same as it did last Thursday?


One Year And A Day

Saturday 20 March, 2021

It’s been a year and a day since I went in to self isolation. That was the phrase being thrown around before the sheilding list went live, I don’t know if many people remember that. And many of us were then left off the sheidling list.

I’ve seen a total of 6 people in the last 12 months, most of them were just socially distanced door meetings. One person was a repair man who came in at some point between the two lockdowns.

I miss Libraries

I miss my friends

God I need a hug

I haven’t been able to visit my mum’s resting place.

And in fact, the reason it’s been a year and a day is because yesterday was the anniversary of scattering my Mum’s ashes. I’ve been a mess most of this week, and only, oddly enough, started to feel better about things, generally, yesterday. I think it was the 12th, last year, when things started to look bad when the government was telling people to only leave home for work and emergencies. So it was from then that I made the decision that, after scattering my Mum’s ashes, I wouldn’t be leaving the house until it was all over.

And since then I’ve left the flat 3 times.

Mum’s birthday, to visit her resting place

December, to get the flu jab.

And two weeks ago to get the covid jab.

People are talking about winding down lockdown, there are anti lockdown protests going on today – as well as the anti-protest laws marches – and people raring to go back to normal. There are still thousands of new infections a day, even though the death rate is slowly coming down, and the NHS is still overwhelmed.

Between the lack of 0 covid strategy and the general public really not caring about the health and well being of other people, I don’t feel like we’ll ever get back to normal. There’s certainly a lot of people I no longer have respect for, consdering they think their right to go to the pub trumps my right not to be killed by a deadly highly infectuous disease.