30th April 2020
I’m Shabaaz Mohammed, and this is my first pandemic journal entry. As a British Asian disabled person, depending on your perspective I’ve been fortunate or unfortunate to live through many different crises. First major one which comes to mind is 9/11 – the war on terror and we are still living with some of those consequences today. The next crisis was the global financial crisis of 2008 and the resulting austerity. Now the pandemic has hit, the lack of investment in public services is plain for all to see with such devastating consequences.
At 8 pm there will be a morale boosting ‘clap for carers’. This government has been negligent in the extreme and they must be held accountable. Applause is not enough.
1st May 2020
This emergency coronavirus bill, although may be necessary – some elements are really really scary. In particular, the element about in emergency situations councils don’t have to fulfil their social care obligations. That’s my understanding of it anyway. Which in practice means they don’t have to honour people’s assessed care packages under an emergency situation within their local area. To be fair, they won’t do this without letting you know but as far as I understand it they won’t have to adhere to the 2014 Care Act.
The Care Act has its own problems anyway. It doesn’t have the words ‘independent living’ in it. It’s been replaced by the word ‘well-being’ which in my opinion is a classic problem with the legal system. It allows you to use phrases like ‘well-being’ which has the effect of totally eradicating the ability to hold anyone accountable. It’s like when it comes to accessibility and buildings and buildings just need to make ‘reasonable adjustments’ under the law. The laws give people enough wriggle room to get out of their obligations to everyone in society. Going forward I would like to see the law being written more clearly, more sure-footedly and getting rid of airy-fairy terms like ‘well-being’ or ‘reasonable adjustments’. The law in this country, or any country, should be a pillar we can all depend on in equal measure. It may be wishful thinking but hey-ho I’m a dreamer.
Today is May Day. Labour Day. I’d like to see unions strengthened here and around the world, and for people on welfare to be able to be part of unions.
2nd May 2020
For me Journals of a Pandemic is a fantastic initiative, especially for a disabled person such as myself. For me this project is a form of historical document and a place where we can all share ideas and become a collective. On odd occasions yes I will just be getting shit of my chest and also talking about politics more generally. These journals can be a great legacy of the pandemic and if the worst should happen and if the pandemic takes our lives, then these journals can be used as a form of time capsules. But we can also use these journals as a way to design a new, just, fairer society for all of us.
Today I’ve been recording, if anyone’s interested, our sixth episode of accessopedia. This episode was about the band in Russia called Pussy Riot. We had a forty five minute discussion about that and activism which was very interesting.
3rd May 2020
How I’m feeling with the whole Covid situation and lockdown: I feel the psychological effect of it just like everybody else. Awareness can be a blessing and a curse at the same time. The more aware you are of things, the more difficult they become sometimes. There are those that believe lockdown will end in a week or two and everything will go back to some kind of normal but I don’t believe that to be true. I believe without medication or a vaccine we won’t go back to anywhere near normal anytime soon.
This is compounded by the fact that I am BAME man with a #disability. On most measures I’m pretty fucked. I’m not looking for sympathy or pity from anyone. I don’t want it, I don’t need it and I’m not deserving of it.
The media: the last two or three days there is article after article of BAME people being more at risk of Covid-19 for a multitude of reasons. One thing I read this morning was the link between Vitamin D deficiency and BAME people. Vitamin D deficiency seems to be quite prevalence. Is it any wonder, I suppose, we do live in the UK. I’ve been told that if most black or Asian people would have their Vitamin D checked they would be deficient and in need of supplements.
I posted something on Twitter today about the lack of the UK’s preparedness because of Brexit. The big ‘B’ word.
A couple of days ago I watched Panorama on the NHS and the pandemic and that whole massive debate about PPE. The UK government downgraded the severity of the pandemic in its official documents seemingly to fit the number of PPE equipment it had so it didn’t make them look too unprepared. They were doing – this was on the BBC documentary – creative accounting. They were counting rubber gloves as singles instead of pairs to effectively double the amount they had in practice.
Politicians and politics: the Labour leader Keir Starmer in the midst of all this seems to be siding with India in the India-Pakistan Kashmir dispute. For a human rights lawyer, I think of that as being a bit bizarre. I heard Boris Johnson the other day answer one of the lobby journalists’ questions by saying when he was asked about austerity leading to all of this – he said, I can’t remember the name of the journalist, but he said ‘you know my instincts on this, you know my instincts’. But that’s precisely the point – we don’t’ know his instincts really on anything!
I heard yesterday that we’ve got a meeting on Tuesday 5th May with the Greater Manchester Mayor’s Panel. I’m representing Manchester #DPAC (Manchester Disabled People Against Cuts). We’re having a meeting with Warren H, one of the executives from the health and social care at GM level. It’s been scheduled for quite a while but we just got informed yesterday that Andy Burnham, the man himself, will be dialling in for half an hour. That should be interesting on some level at least. That’s enough from me for now.
4th May 2020
It’s all about fun fun fun as well. I don’t want to come across to anyone reading this as a miserable fucking twat because I’m far from it - luckily for me, and everybody else, I suppose.
Enjoying life when and where you can: in the last 24 hours I’ve seen quite a few articles talking about the long-term damage that this is going to do to people psychologically. We as a human race need to do what we can to minimise that as much as we possibly can. I believe we do that by connecting as much as we can to one another, communicating with each other, on platforms such as this, but also the other videoing and social messaging apps.
Communicating with our friends on Facebook and finding which are actual friends and which are just collecting people for the sake of collecting people. Re-evaluating our relationships with sport and the world of entertainment and celebrity and separating those worlds from the artistry itself.
People like Zinedine Zidane – he was an artist – a football player. But football, a traditionally working class sport is now a playground for not just the wealthy but the super-rich, the oligarchs, the sheikhs. We need to prevent sports-washing as much as we can once we get back to some semblance of normality. We have to get away from football players being paid half a million pound a week basic salary. That’s on top of all the endorsements, sponsorships and bonuses.
I’ve just been reading about our prime minister [Boris Johnson] preparing for a death-of-Stalin-type announcement on his death and hearing about the Oxford vaccine efforts and the company AstraZeneca. I’ve just heard the culture secretary has written to the BBC Director General to complain about the Panorama example. Classic Trumpian tactic of undermining the media.
People are continuing to have parties. Police broke some up in Liverpool.
Would be useful to keep an eye on the NHS App for contact tracing of people with the virus in the context of civil liberties and personal data and what the authorities or private companies do with it.
We’ve dipped below the 100,000 tests a day mark yet again.
May the fourth be with us. Discovered that yesterday was Press Freedom day – International Press Freedom day. Today we had an alternative kind of Christmas speech and the alternative SAGE (Scientific Advisory Group for Emergencies) group – the group of scientists advising the government. There has been an alternative group set up called the independent SAGE group. Today, I’ve also had a long and fruitful meeting with Manchester #DPAC (Disabled People Against Cuts) where I learned that the government is not going to bail out the university sector. That is going to have a very detrimental effect on disabled students in particular. In that meeting I also learned and discussed various other things which I will talk about at a later date. One thing I am concerned about in the last 24 hours is the idea of the government’s contact and tracing app with regard to human rights and use of individuals’ data. I’ll leave it there for now.
5th May 2020 Long day of zoom meetings. First with one of the executive directors of the Health and Social Care Board of Manchester – Warren Heppolette. Then a meeting with the Andy Burnham Mayoral Panel for disabled people. They both laid out general visions of wanting to work together with Disabled People’s Organisations (DPOs). They were both making the right sort of noises but there is a big gap between theory and practice. Just to point out, yes Andy Burnham did himself make an appearance on his own panel today. As I said they were both constructive meetings but we will have to wait and see what actually happens. What I’m learning about power structures is - because I don’t consider myself a bureaucrat – the higher up the chain you go, the less and less power people have. This is a general vibe I’ve been getting over the last couple of years. There is a big gap between the big picture thinking, the kind of systems and services we would like to see and what is actually happening on the ground. There’s a massive gap, a fucking great big chasm between theory and practice. One of the fun things I learned in the last 24 hours is that the small country of Iceland, which has about 300,000 people, has an app – don’t know what it’s called – what its function is, don’t’ know how to put this in a delicate way so I’ll just put it like this – it’s function is to try and help you avoid sleeping with a relative. You learn something new everyday hey?
6th May 2020 Been having yet more meetings. I hate being a fucking bureaucrat. Today’s meeting was about the podcast or the lack of it. I hate not being able to be a jazz man - not being able to do what comes from the gut is a real source of irritation to me. Let’s hope the episode sees the light of day sometime in the not too distant future. The main thing I wanted to speak about today was the death toll in this country. We’ve reached 30,000 deaths. Well over. That is - for want of a better phrase - a very conservative estimate. This is no fucking laughing matter. We’ve become the country with the most reported deaths outside of the United States and our population is not even 70 million. The US population is over 300 million. They have about 80,000 deaths at the moment. The other thing I wanted to mention today was the contact tracing app that this government is developing with NHS X and various other companies. Over the last 24 hours I’ve been listening to Matthew Ryder QC asking questions of the government’s centralised app. This country wants to use a centralised app rather than a decentralised app that South Korea and other countries such as Germany have used. My limited understanding of this is that a centralised app is obviously the information stored in one place and the decentralised app is as far as I understand – with the information on individual cell phones. All this is in the context of this government and some of its special advisers being involved with companies or former companies such as Cambridge Analytica. It worries me about cooperating with this app, whether I should download it myself but there we go.
7th May 2020
Today I wanted to speak about accountability. With over 30,000 people dead – being a conservative estimate – I really hope when we come out of this to some kind of normality, that people who have made catastrophic errors which have led directly or indirectly to people’s deaths on a mass scale – I feel it’s imperative that people are held accountable. Don’t just want endless enquiries promised, people getting a little slap on the wrist, token gestures and black marks against their names. I don’t know what punishment fits these particular crimes but I do know one thing – that people can’t get away with stuff like this again and again. In this country we seem to be past masters setting up big enquiries – like the Leveson Inquiry, like the Iraq Chilcot Inquiry, the Grenfell Tower Inquiry – with none of them having any real lasting consequence or resulting in any great accountability. I don’t just want anybody to get away with mass murder basically.
8th May 2020
Today I want to mention the incident that happened in #Manchester a couple of days ago where a man got tasered by the police at a petrol station in the presence of his young child. It’s unclear about the circumstances surrounding it yet but I don’t want to say too much. In other news, I have been recording the 7th episode of our podcast. The podcast that we haven’t quite decided the name of yet, we still don’t’ know if we’re doing it as part of the coalition of disabled people or if we’re doing it independently so there is a bit of a tug of creativity at the moment, the conclusion of which will be very interesting. It also incidentally chronicles the virus because we began the whole process 8 weeks ago. Bizarrely the queen is on the TV now.
9th May 2020
On the eve of a non-announcement, the prime minister of the UK will I presume announce some more confusion: more mixed-messaging; more claims of success and victory in the face of obvious global defeat and embarrassment.
Lockdown will not end for the vast majority of people, especially for the most vulnerable amongst us. Everybody really needs to be honest – it won’t end until we have a vaccine or a pharmaceutical solution or a herbal remedy. The sooner we come to terms with that as a group of people, the better.
Happy days, happy days – just because we need to be socially distant, doesn’t mean we need to be socially distant. Communication is key. And enjoying life, wherever and however is possible. That is indeed what you want to do.
10th May 2020
‘Stay alert’. If only the government could follow it’s own advice and see the problems coming from Europe and be alert to the virus itself. We wouldn’t have the second highest death toll in the world.
11th May 2020
To me it just feels like we’re fast developing into a third world country in terms of our planning and our infrastructure and messaging and this all goes back to government’s defunding of services over the last 10-15 years.
And they keep saying ‘protect the NHS and save lives’, but it’s people in power that haven’t protected the NHS (the National Health Service) over the last 15 years. That has contributed to us being in this predicament now. Everybody used to say the NHS was a world class service and was the envy of the world. Right now, it’s one of the poorest performing services in the world in terms of deaths and day-to-day services.
Before anyone starts having a go at me I’m not having a go at the individuals that work in the NHS. They are doing an amazing job. I think that goes without saying. What I’m having a go at is the political decisions around the National Health Service for the last decade and a half or maybe even longer. Because when the service has been put under extreme pressure there have been sections of it which have been found wanting. That only comes down to, in large part, the reorganisation of the NHS, the privatisation, and the constant running of it like a business and cutting corners. Running it like ‘NHS plc’.
It also feeds into the lack of social care reform. There is always a new plan promised. The government’s green paper on social care has been promised for years now and it hasn’t come to fruition. I personally have been contacted by health and social care today and have been asked to conduct my annual reassessment over the phone – which just adds a whole new layer of worry and stress and pointless bureaucracy.
The lack of funding for social care has contributed to some of these deaths that we’ve seen in #CareHome-s. The short sightedness of the powers that be and of policy – people being left in care homes when they could be living in the community if they had the right social care and not to mention all the other evidence about the inequalities of society being one of the major risk factors of Covid-19.
Yes – the virus doesn’t discriminate but this pandemic is shining a razor light on our existing inequalities and who the government have prioritised and who they have not: who they can live with and who they can live without. I think the virus is a great amplifier of already existing social deprivation and chronic structural problems within society. All the problems are coming to the surface. Now what we need to do is look a bit harder. We need to speak about them in order to try and fix ourselves as a global community going forward.
12th May 2020
Today I’ve had another Disabled Persons and Andy Burnham Panel Meeting.
Today is also International Nurses Day and the Independent Sage Group have also released an independent report into the pandemic and what should be done.
The Human Rights Commission have also announced they won’t be holding a separate investigation into Islamophobia. They are just going to wait for the Conservative Party to finish their investigation and take it from there.
13th May 2020
Now we’ve had the Independent Sage Group report and we’ve also had the government’s 60 page report – or road map – or whatever you want to call it – and in a bizarre turn of events Piers Morgan seems to be the conscience of the country. A situation I don’t think anybody would wish.
We are now behaving in my opinion like a failed state where government isn’t putting up ministers for interviews if they are being given a hard time by reporters. Lobby journalists such as Laura Kuenssberg from the BBC, Vicky Young – also from the BBC, Rigby from Sky News, Peston from ITV – engage in this false game of wrestling. The fact is sports entertainment at this point seems a lot more real and competitive than relationship between lobby journalists and the Prime Minister.
Not to mention all the thousands of deaths in care homes which could have been minimised. I hope they don’t get away with this.
14th May 2020
Today there has been a lot of information about people with learning difficulties and other health conditions having a higher mortality rate with reports from the Care Quality Commission.
Today we also had our #disability survey covered in the national news by ITV which I suppose is good. But it’s very good if it informs policy and improves decision making. I’m talking about both the survey and the actual fact of news outlets covering it. It also puts the Manchester Disabled People’s panel into people’s consciousness. Hopefully it can do some good, save some lives, and enshrine independent living as a right once again.
15th May 2020
Today I’m struggling a bit to be honest with the whole thing. The pandemic, life in general and all the other things going with it or not going with it as the case may be, and the whole future aspect of things going forward. It’s not really the pandemic that is the real problem for me at the moment. Obviously that is a problem if you or your loved ones get it, if I get it, or someone close to me gets it – that is a major problem.
But at the moment the major issues I’m finding is dealing with people and its proving trickier than I thought it would be. Because I pride myself and fundamentally believe I’m a people person but this pandemic seems to be bringing out terrible sides in people.
The whole thing of bureaucracy and dealing with institutions is just an absolute fucking nightmare to be honest. When push comes to shove, you realise that nobody’s got any fucking power whatsoever. And that is a really scary realisation to come to.
Thank God for platforms such as this. There are a few other platforms I can get my thoughts and feelings out on and thank God for all of those, because if it wasn’t for all of those I don’t know what people like me would do.
I remember there are institutions and bureaucracies that have been trying to get rid of disabled people for two decades by underfunding the services we rely on, by creating climates of fear, and creating situations of strivers versus shirkers or workshy people or benefit scroungers. By demonising immigrants. Its immigrants which are keeping a large section of society running and alive.
Not just immigrants, also the key workers, as they call them now. The cleaners, carers, train staff, supermarket workers – these are the real engines of our – I don’t like to say economy, I’d much rather say – society. These are the people that keep society functioning on a day to day basis. Not the execs and not the brokers and the hedge fund managers who’d work remotely all the time if they wanted to. The bus drivers that get us to work, the taxi drivers that get us to work and to our appointments and wherever we need to go, to visit our friends and family.
So as we come out of this crisis, there needs to be a fundamental evaluation of our society. We need to make sure we value the right kind of people. Not the sports stars and film stars and social media influencers. We need to respect the engines of our society rather than the cherries on the top. We can’t worship people like David Beckham.
We need to hold our governments around the world to account. The catastrophic failures are not just in this country but around the world. We need to boot them out of office – jail time if necessary – I always think the biggest kick in the teeth you can give to a politician is to ensure they never have any kind of legacy whatsoever.
Going back to the situation at hand, the deaths in #CareHome-s are just unbelievable and it just scares me, the idea of growing older. We are meant to be a developed nation, a first world country. We’re going lower than a third world country I believe. The NHS needs to be saved. At the end of this crisis we need to get rid of the majority of the private investment in the NHS and private provision of services because the NHS has been set up to fail. I’m not criticising the individual workers, but as an institution the NHS has failed. I don’t like saying that at all – but that’s just what I believe at this present moment in time. It’s been set up to fail by successive governments, by underfunding it, and by under respecting it and the people working within it. Social care is in a very critical condition right now and it needs – not repairing – but a comprehensive system being built around it based on independent living and dignity and respect for human life.
16th May 2020
The day German football started again: Borussia Dortmund versus Schalke with no crowd present at all.
Yesterday in the UK we’ve had over 400 deaths from Coronavirus. It was announced yesterday that all #CareHome-s - staff and residents - will be tested. Isn’t that what they call bolting the door once the horse has left – or something like that? Stables - once the horse has left the stables. It’s one thing saying you’re going to do something and another thing actually doing it – so we’ll have to wait and see on that one.
The mental health problems resulting from Covid-19 are going to be a massive problem. We’re all really going to have to come to terms with it in the next decade. Hopefully this can be mitigated by having a more adjusted and adaptable work-life balance. And we’ll get out of this pandemic situation either by medication or a vaccine or a treatment.
We must take this opportunity and ensure every single human being on this earth, or living thing, has self respect and dignity afforded to them.
17th May 2020
Today I feel like a global journalist where I’ve learnt about:
the South African cigarette and alcohol ban during lockdown
the really effective ways the Caribbean islands have dealt with the virus (they’ve only got fatalities in the 100s and large sections of the society seem to be keeping on with the whole lockdown thing);
protests in Belgium - a health minister was visiting a hospital and all the healthcare workers turned their backs on him as the ministers’ motorcade arrived;
Cuba’s got a very small numbers of cases - there seems to be a pattern emerging of smaller nations that have dealt with natural disasters and other disasters who seem to have dealt with the whole pandemic in a better way - in a more humane fashion.
Economics seems to be winning the argument at the moment, healthcare becoming secondary again.
Today it’s been announced a vaccine factory is being readied. We’ll have to wait and see what happens there. But it still remains the case that the countries that have dealt with it the best have been the ones that have acted decisively and swiftly.
Meanwhile we keep hearing about austerity and cuts coming down the line – over the hill – as they put it.
I forgot to mention the Covid hotel in Israel. It is what it says on the tin. A hotel full of Covid patients living side by side with Palestinians and Israelis. A microcosm of a future – a potential roadmap if you will – of a two-state solution. Maybe something magnificent can come out of this pandemic. People living in harmony side by side.
18th May 2020
Today I’ve just finished a #DPAC (Disabled People Against Cuts) meeting – the Manchester Branch. Interesting discussion about care homes and independent living more generally and the problems coming down the track for all those who need social care. Also some urgent discussion about the fact that our government needs to learn lessons fast and implement those lessons ASAP.
Also heard today that new symptoms have been added to the Covid list, those symptoms being lack of taste and smell.
It seems we have to fight for independent living more forcefully all over again by the sounds of things.
19th May 2020
Today we had the weekly panel meeting. We discussed topics such as health passports which seemed to me to be a grim but a valuable resource for disabled people.
And talking about death, today it was revealed by the Office of National Statistics (“ONS”) that actual excess deaths due to Covid-19 could be in excess of 55,000. That’s so far.
Everything I’m hearing and seeing is leading me to fundamentally believe that we’re having to have the same fucking arguments and battles over and over again. It’s very cyclical – the whole nature of society at the moment. Basically we just keep regurgitating the same problems and nobody comes up with any solutions.
I know I keep banging on about it but solving the system of funding in the social care system is vital to this whole scenario because of what’s happening in places of residential care for elderly people.
This government has been saying it will fix social care for 10 years and hasn’t got anywhere near doing it. The big worry for disabled people is that because of all the elderly people dying and #CareHome-s being privatised, that a lot of disabled adults will be moved into residential care to plug the gaps – to save councils money in the future.
That’s something that as a society we need to guard against and ensure that it doesn’t happen – not just for the disabled community but for everybody – now and future generations.
20th May 2020
01:15 am: It slipped my mind that we have passed the Immigration Bill in the United Kingdom. It seems we only valuable people who earn £25,500. It’s beyond absurd.
During this pandemic we have had one of the highest death tolls in the world, only standing at about 60,000 people, that being the equivalent of a full capacity crowd at some Premier League grounds – think about that for a few seconds – 60,000 people, 60,000 families destroyed so far.
Meanwhile, normal service resumes. Arcane parliamentary procedures followed and racist immigration laws passed. Great Britain!
6:25 pm: Summer, summer, summertime! Just had a very interesting discussion with my podcast host partner about a whole range of things at our production meeting. One thing we were discussing were the pros and cons of an official enquiry.
Today is the eve of my annual social care assessment which is very stressful.
Just to make matters worse, a cyclone has hit India and Bangladesh just in the last few hours - Cyclone Amphan.
21st May 2020
My first Zoom social care assessment was today. It went ok. We’ll just have to wait and see.
22nd May 2020
Today, we’ve been having a production meeting for a potential podcast. We had some technical difficulties. There has been a plane crash with Pakistan International Airlines (“PIA”). We do not know how many it has killed on the ground yet but it crashed in a residential area.
Today our government has announced it will quarantine people coming into the country for 14 days which begs the question why wasn’t this done earlier. They keep saying they are doing the right thing at the right time but having had nearly 37,000 deaths officially (unofficially around 65,000).
It’s hard to have any faith in our authorities in this country - especially when you look around the world at places like Japan where they have had less than 800 deaths. They have a much larger population that we do. They have a larger percentage of older people as well.
In the UK just today we have had over 300 deaths. The authorities still want to open schools. I personally think that’s a very bad idea.
I wonder how any institution can have confidence in this particular government we have at present. They haven’t’ got a track record of honesty or transparency.
23rd May 2020
It’s officially been announced we had another 282 deaths. The media and news agenda seem to be obsessed with the whereabouts of the Prime Minister’s special adviser. It’s an important story but I don’t think it’s life and death – it's a classic distraction story. We need to keep thing in perspective when Spain has announced it had less than a hundred deaths on a consistent basis. This is not a game.
24th May 2020
First ever and hopefully last Eid in lockdown but to be honest I don’t think it will be. It has been largely the same but different. I would celebrate anything, anytime anywhere – well almost anything. Life is about making a mark.
Today I have been having a podcast meeting and spent some time on some potential future projects. Also been listening to the government’s special advisor’s press conference / explanation. Ironically or absurdly it seems to be cutting into the daily Covid press conference, illustrating the point fantastically that it is becoming a distraction and we are not getting the daily update at the moment. Because it is nearly half-past five and we have not had the daily press conference today.
So far this whole thing seems to be a very British obsession which is reaching ‘The Thick of It’ absurdity levels. I think we’re reaching peak pandemic fatigue at the moment. People are just getting sick and tired of social distancing and not seeing people and this and that. I think it’s a complete and catastrophic error in terms of public safety and saving people’s lives. If the media move on from the pandemic and concentrate on the people involved in it rather than the actual pandemic and take their eye off the ball it could lead to catastrophic loss of life and put our country in a position which is very hard to recover from psychologically and economically and health wise. Internationally we haven’t exactly covered ourselves in glory. Nearly 40,000 deaths officially.
25th May 2020
Thought it was noteworthy and important to keep it in the public sphere the idea of BAME deaths. Apparently six out of ten healthcare workers are from an Asian background and over 200 healthcare workers have died so far. Using the war metaphor doesn’t really help and doesn’t negate the suffering and hardship they have gone through. It just assuages our conscience as the British public. What needs to happen is for their profession to be respected by being paid at the right amount and be given the best working conditions in the world. Because health is wealth. That’s what we need to remember coming out of the crisis.
Today I came across the civil servant twitter page – the UK head civil servant one. One of their employees had said on it “who would work for these truth twisters” – it had gone viral over a couple of hours. Whoever had put it on there had deleted it soon after.
Japan is also ending its state of emergency.
26th May 2020
Had another panel meeting today. With Boris Johnson repeating the mantra of him and his aides acting lawfully, responsibly – with the government’s history of proroguing parliament and matters of that nature it just shows to me the limits of the judicial system. This is becoming a massive distraction. We could be talking about stuff like the Care Quality Commission report and things like that, the lack of social care planning, the problem of the furlough scheme ending, not to mention the reopening of schools and how impractical it is, the provision or lack of Special Educational Needs support. Provisions being stripped away for SEN children, the coming welfare reform yet again. It’s inevitable that this conservative government, well any in history, would try and reign in public spending. This is not a party political thing. This is just what I’ve seen in politics over the last 20 years with all political parties.
I’ve also heard today that the Stamford Prison Experiment may have been a hoax. I heard it on Novara media.
27th May 2020
It’s interesting to hear about the fast fashion protests in places such as Pakistan where textile workers are going on strike or are being sacked without notice. They are being charged and shot by police for protesting. An ugly result of fast fashion taking root.
There’s an urging here to have reviews and reports about the relationship between Covid and income inequality and BAME people. If you think about it, without wanting to come across as a victim, statistically I’m pretty fucked. But it’s not about me, it’s about creating a better and more tolerable society for us all going forward. I want to play my part in that however I can. As a British Asian disabled person, I feel it’s about time people were held to account so on the one hand I want to move on from the Dominic Cumming story but on the other hand I want everyone to keep the pressure up and make sure he faces the consequences of his actions. He has played an instrumental part in the strategy here and in the election campaign too and the strategy in the referendum.
This isn’t a vendetta but there has to be a time when enough is enough. I just wish Boris Johnson had protected disabled people as he’s protecting Dominic Cummings. Then we wouldn’t have anything to worry about.
On the one hand I want the story to go away. On the other hand I want him to pay the price for what he’s done.
I’ve heard a lot of chatter about judicial reviews, reports, surveys, inquiries and all of that jazz. I think they’re just another way of just kicking the can down the road and no one in a position of power wants to make actual decisions. I just wish these reports and judicial reviews, inquiries actually resulted in solid fundamental systemic improvements to everyday people’s lives. It gets a bit tiresome and exhausting to keep fighting and feeling like you’re pushing a boulder up a steep hill. When you get near the summit someone just nonchalantly and effortlessly kicks you back down again – that’s how it feels.
28th May 2020
Emily Maitlis of Newsnight has been replaced because of last night’s episode when she spoke of the PM’s “blind faith” in his advisors. It appears to me as if we are living in a failed state now. I’m pretty sure that I’ve said this before. The government of the day effectively tells a state broadcaster, a publicly funded body, what to do: not a good look for a supposedly developed nation that champions democracy – well used to anyway.
Today I got invited to a zoom call with unions and other campaigners around the response to the Covid - care homes situation. It’s been a busy day. On that call there were three or four of us disabled people. It was almost like we gate-crashed the party as it was predominantly union members and other stakeholders, solicitors and professions of that nature. Then there were three or four representatives of disabled people. I think we kind of opened their eyes. I think we shamed them a little bit as well which was not our intention. We were basically singing the virtues of independent living. Not a lot of people seemed to know about the distinction between social care and care in the community for working age disabled people. That was good but let’s hope something comes out of it and we can avoid an even bigger catastrophe when the second wave hits which I’m really concerned about. Today there were a lot more people out and about in the gardens. A lot more people gathering together. It’s almost as if lockdown has ended officially and unofficially which is very alarming because I’ve seen a trend in the last few days of people being a lot more casual. You can definitely notice a shift in people’s attitude. In terms of the very limited number of people I’ve come into contact with anyway and spoken to through various different means.
It seems that the Hong Kong protests are back and the Chinese seem to be taking advantage of the pandemic to increase the grip on Hong Kong and they are also introducing a national security law.
A whole range of issues today:
- A national security law has been imposed on Hong Kong which is going to be a retrograde step for human rights in that territory. Unsurprisingly cases of Covid are rising in Hong Kong;
- The George Floyd issue in Minnesota.
- In this country in the UK we are apparently loosening the lockdown even further because supposedly we’ve met the five tests that the government have set itself to downgrade the threat level to I think number 3 and I think the whole test is bollocks anyway. We were never in proper lockdown in the first place. It’s all complete bollocks. It’s going to end very badly. The question is how badly and whether I’ll live to see the other end of it. It just seems to me that people have just given up and gone back to their daily lives.
- The BBC are apparently getting complaints from both sides about Emily Maitlis now. Those against her and those thinking that the BBC have gone too far.
- I’ve been recording the whole Podcast with the Coalition of Disabled People called Accessopedia. Me and my copresenter who I don’t want to name have been trying to get the podcast off the ground for 2 months. We’ve now got one called Crip Chat which is just us two shooting the shit. The other one being Accessopedia in conjunction with the Coalition for Disabled People. I don’t know which of the two I prefer doing although both have value.
- On the plus side the weather has been amazing.
Today I have left Accessopedia, the Coalition of Disabled People’s podcast with the very horrendous recording experience we had so we can focus on our podcast Crip Chat. Day by day I feel the government is treating disabled people with more and more contempt. But the weather is beautiful. A very stressful week is coming to an end. I have something resembling a Friday Feeling. Peace out and love and respect.
Today I want to talk about a lack of credible political leaders globally as well as nationally and locally for that matter. I don’t think in my lifetime we’ve had any truly outstanding political individuals but they’ve not quite made the top grade as far as I’m concerned. There’s a lack of political awareness, knowledge, agility, principle, dignity, imagination, political astuteness – whether male or female.
I’m not going to name those I think have come close but there have been a few. Only about a half-dozen I would say though. It has become about preserving the status-quo. Even Jeremy Corbyn and Bernie Sanders I would argue are establishment figures. On the fringes of establishment, but establishment nonetheless. I would say political education needs to be reformed. The vast majority seems to be going to the same schools. If you keep doing the same thing and expecting a different result that’s a sign of insanity, right?
The establishment figures are just focused on preserving the status quo, not rocking the boat. Just gently nudging it now and then to make it appear that there is something different. Keir Starmer is the latest manifestation of this. The Labour party have been tried to be different by having Corbyn as leader, a guy who has been an MP most of his life, a relatively privileged life. He has been on the fringes of the labour party and establishment, but he is establishment nonetheless. Yet even he was painted as an outsider and radical by large sections of the press. They put the boot in from every angle and painted people like him and Bernie Sanders as real outsiders when in actual fact they are not outsiders at all.
We all need to acknowledge there is a problem in order to fix it. In the political system there is that problem and I just want to start that debate and open conversations.
June, July, August entries uploading...
The return of a very very important person in my life. A pointless bank holiday. The ____ lecture is interesting. Let's see what happens actually on the ground. Like they always say - there is a lot of theory, but what does it actually mean in practice. There are a lot of structural problems. You've got social care and housing to consider and day-to-day living.
I'm also a fan of the BBC, at least the idea of the BBC and the theory, but not the fan of how it is run in practice. But I love the principle behind the idea of the BBC. To me it is similar to the NHS. But the NHS is far more important. But nevertheless I have similar levels of affection for them both as ideas.
Today is 1st September. A pleasant day. Today I actually got a chance to go out and about. For once, no zoom meetings which is nice. A lot of stuff reserved for this week's episode of the podcast. Tonight we have been coming to the end of the American Office, which is a bizarre show, and not always in a good way. Badaboom bada bing.
Today we have just finished the American Office. The TV show. It was ok in parts but very meandering. The pacing of the show was all over the place. There was no consistency of character. For lots of the characters apart from one or two. We also had a production meeting today. This weekend is the DigiFest on 4th and 5th September. For which, we have a 18 minute slot where we are going to have a section about an American interview we did with Darren Baldwin a month or two ago.
Then we are just going to put out the whole podcast interview as an episode instead of a regular episode of the show. Late tonight I am getting worried about the fact I am going to have carer / PA issues tomorrow to deal with, which is fun fun fun. And in all honesty, very stressful. Will have to wait and see. It is very stressful to be honest.
Well the carer issue didn't turn out anywhere as bad as I thought it would be. It wasn't perfect but it was not painful either.
Today has been the calm before the storm. The storm that is coming that is Digi-Fest. When I say storm I just mean to say that I just don't know what's going to happen or what to expect. It's perfectly plausible that absolutely nothing happens. I will send the link to the Youtube interview later. We will release the full episode simultaneously. Me and my podcast partner. The rest, as they say, will come out in the wash. We will have to see what happens and when it happens and if it happens. P.S we found this bizarre article today from the British Medical Journal. Bizarrely reviewing the TV show I was part of 11 or 12 years ago. It was fucking bizarre.
Today we have recorded an episode of the podcast - empathy theory. It is the even of the Digi-Fest interview showing today. The actual debut is tomorrow. Charlie Kaufman's new film is out on Netflix today - Thinking of Ending It.
People around me are having a lot of medical issues which I am very concerned about obviously but I want to keep everyone's privacy intact. It is non-Covid related. Or not directly related anyway. It's a very anxious time.
Today is Manchester DigiFest day. For me it has been quite a laid back day. Been for a drive. Watched an episode of ' All or Nothing ' about Tottenham Hotspur. Had a reasonable response to the interview with the Washington activist which premiered at DigiFest.
I would have loved to have hundreds of views obviously, but like I say - it's been steady, which is ok. Massive thanks to Darren Baldwin for doing the interview or having the conversation - whichever word you want to use.
I discovered a project called Open Coaching. Weirdly, it's about food and disability. Nutrition is something I am very interested in, in terms of prevention of disease and illness and well-being although I hate that word. Essentially prevention is better than cure.
We are hoping eventually to speak to the person who runs that project and somehow get involved but hopefully it will eventually start a global disability nutrition movement.
There is a gap that needs filling in mainstream society.
I have also watched 3 episodes of an Amazon documentary ' All or Nothing ' which is kind of amusing. In terms of my own creative efforts, I believe I get inspiration from all kinds of areas of life and facets of the human psyche.
I don’t’ want to be accused of being a miserable fucking twat or people reading this journal and thinking he is fucking miserable. Luckily that is far from the case so today I will start by mentioning a couple of kind of funny stories that amused me anyway. One is about the TV presenter, Neil Buchanan having to come out and put to rest rumours he was Banksy. It reminds me of the story a couple of years ago about H from steps having the same name as that the guy who did terrible things – the frontman from Lost Prophets. Because of social media, people were giving H from steps loads of abuse. A case of stupid mistaken identity. One of the other stories I read the other day was Djokovich accidentally hitting one of the line judges at the US open I think. It happened yesterday. Quite clearly an accident. In terms of personal goings on, today is just logistical bullshit really. Coronavirus in the North, cases are rising. Brexit is back in the news, so it seems people are taking the eye of the ball with that shit.
There is mounting evidence the virus spread is fast approaching again which is very worrying because of schools opening – they’ve already opened up. Extremely concerning.
Today is 9th September. Another day, another birthday of a person close to me. Happy birthday to them. Today has been a very domestic day. Home repairs, shopping and such like. And also – an unexpected production meeting today as it was scheduled for the 10th but it happened today which was no problem. It went reasonably well but time will tell. We’ll have to see the actual recording.
Tonight I finally have a chance to watch a film that I had been wanting to watch for about a week by one of my favourite film-makers in the world – Mr Charlie Kaufman.
I am thinking of ending things. That’s the actual title of the film. I may not have got the title exactly right but along those lines. This film, as with all of them, is one to ruminate on. Also, I had a visit from a relative today which was kind of nice. A flying visit. And I’m thinking of ending this journal entry there.
P.S I have just this very moment discovered that the great Charlie Kaufman has written a novel and wanted to share that with you even though it is nearly 1.16am. I’m really really really excited about this obviously.
I have had a good conversation with a good friend long conversation but a very very good conversation. Just such a long time.
Generally today has been quite an irritating day for one reason and another. I have been spending a lot of time doing logistics, planning for the podcast and infrastructure planning such as social media for the podcast.
Today is September 11th. And today 19 years ago the world changed forever in my opinion. It always has had seismic shifts throughout time but in my generation this was one such shift. On a day when something just shifted in the consciousness of the world I believe. In terms of South Asian people.
I just wanted to mention that for the first time since 20th March this year, we have not recorded an episode of the podcast. That’s because my co-host is ill. And as far as I know it is not coronavirus. It has been a very stressful week but let’s hope we can stave it off for a little longer.
The weather has been good.
September 12th – another very important date in my calendar. Somebody very special to me has a birthday today so happy birthday to them. The premier league season has kicked off today. The Oxford vaccine trial which was temporarily paused has now restarted or has been reactivated. Cripchat Twitter account now has over 500 followers. To provide context, I have been on Twitter for 11 years now and am still below 500. We started the Cripchat Twitter account in June 2020. Impressive. I would say that wouldn’t I.
I have started Charlie Kaufman’s debut novel and it is obviously very Kaufmanesque.
Today is yet another day and yet another birthday in my life. This time of a very close family member so happy birthday to them. I wished them happy birthday and they said in return that they were very blessed to have me in their life. Which I found is obviously very touching and believed noteworthy. We are all worth noting, whichever way you want to put it.
The UK is yet again embarking on a new set of Covid-19 rules which nobody will follow. And I am absolutely fucking dreading the second hit of the Coronavirus, which as far as I am concerned, seems inevitable. Just like death I suppose. But let’s hope we can stave it off for a little bit longer yet.
The upside is the weather has been good.
Well well well, I seem to have made it to journal entry 150. Today is 14th September and no it's not another birthday. I am going to make this date down as a date when my healthy lifestyle kicks in again. I will call it conscious eating - I hate the word diet. For the next few months I am going to try and eat consciously and healthily again.
What seems to be a busy week ahead. Luckily all being well I will carry on with Charlie Kaufman's novel today and may also watch David Attenborough's 'Extinction' on BBC iPlayer. And I will also read Wallace's - I can't say the name of it. And I neglected to mention that I watched part of a documentary on the weekend on Netflix - 'the Social Dilemma'.
Yet another dramatic day, or should I say stressful for various reasons. Hopefully all is well that ends well for this 150th edition of the journal. It's not over yet. I started recording this entry this morning and now it is fast approaching evening and I won't make the final submission until tonight.
In the meantime two bits of actual news. The opposition leader, only in name in my opinion, Sir Keir Starmer, yes Sir Keir Starmer is apparently having to self-isolate because one of his family members is displaying symptoms of Covid-19. In other news, Japan has today got a new prime minister. Relinquished his post due to health issues - non Covid related.
I watched 'Extinction'.
15th September 2020
Today I have had one zoom meeting, a sociable one and a very pleasant one. A very enjoyable one. There are still scammers out there, prevalent, trying to make a fast buck by exploiting people and ripping people off.
We have also had a production meeting today about a possible US interviewee tomorrow, which will be our show for this week if it comes off. I never like to talk about things until they've actually happened so you'll just have to wait and see on that front. A lot of stuff - niggly podcasty stuff - has been done today. Not always successfully but it's been done, or been attempted anyway. Also checked out that Novara Media video on the book 'Left Out' on the inner workings of the Labour Party. Absolutely ridiculous picture from what the two co-authors were saying.
To finish off with today was the bizarre story about Madonna directing her own biopic. Talking about working an angle or coming up with an angle as the case may be. Or I suppose you could call it the absolute pinnacle of narcissism - material girl in a material world.