Category: New New Normal

As we all know, the pandemic is having a huge impact on the economy and so many livelihoods have been lost or are at risk. Previously I haven’t known what to write about this, because I don’t understand economics or finances at all and I have no personal experience in this area to share. However, I’ve recently had my attention drawn—via the news but also through a friend who’s a freelance musician—to the huge gaps in the government support system that so many people are falling through.

There is a petition online for a more responsible policy for the hospitality industry. If it gets enough signatures, it has to be debated in Parliament.

Earlier this week, my aforementioned friend joined the protest in Westminster about the lack of support for freelance musicians, many of whom have lost all or most of their income due to venues being closed. Previously there has been a similar protest by theatre performers. I’ve done some googling to see if I can find a petition for greater support for the creative industries, but not found one that is still open. If anyone knows of one, please share it in a comment and I will update the post.

This post follows on from my earlier posts Don’t Get Bitter Parts One and Two. In Part One, I discussed some reactions from the disabled community to the sudden widespread provision of accessibility.

I personally have benefited from the widespread move online hugely, and have chosen to stay positive about its availability now and hopeful for long-term change of societal attitudes. But I’ve also seen a lot of resentment around that people, organisations, companies and institutions are suddenly providing what had been previously denied to many of us.

Something I have not yet mentioned in this blog but which has been raised within my family is with regard specifically to home learning, since my parents had to fight a battle with the school and relevant authorities to get home tutoring provided for myself and my brothers, when we were school age and not healthy enough to attend. That’s a very painful part of our family’s history that’s left all of us scarred to some degree. It’s easy to get angry at the “they have to be in school!” attitude we received then when looking at how flexible and accommodating the educational system has been forced to become now.

Earlier today, I discovered through a support group the announcement of provision for a specialist NHS service for people facing long-term health issues as a result of getting the virus, and it’s also been met with bitterness. ME/CFS is closely linked with Post-Viral Fatigue Syndrome, and specialist services are a postcode lottery that vary in quality. There also still persists damaging attitudes about the condition within the healthcare system, such as it being “all in the mind”. (Which it isn’t!)

Although I’ve tried to stay positive during this crisis, moments like this are still challenging, and I get hurt and occasionally angry too. But we can turn our pain into action, grab the opportunity with both hands and use it to spread more awareness. The world is waking up to the difficulties faced by disabled people on a daily basis, and we need to keep that going in order to educate society as much as we possibly can.

Easy to say, but how?

If you’re reading this and you have never had a long-term disability or health problem, have never been on the receiving end of ableist or ignorant attitudes or had to fight for your rights, be thankful. Many people live in what is essentially lockdown, permanently, for years, often without ever knowing if they’ll ever be healthy enough to come out of it. Take a moment to consider that, and how it might feel, and then take some time to educate yourself. If you don’t know where to start, here are some ideas:

• Read the Spoon Theory, which is an analogy to describe what life is like for people with various chronic conditions that limit energy.
• Contact someone you know who’s disabled, and ask them what they would like more people to know about what life is like for them. (Don’t put them on the spot unexpectedly! Ask them to take some time over it and get back to you when they’re ready. A written message would probably be preferable for most.)
• If you run any kind of company, organisation, institution etc which has had to move online, open a discussion with those for whom this has been a blessing and what they would welcome in a post-pandemic future.

For those of us who have struggled with these issues or are currently struggling, making change happen doesn’t necessarily require investing lots of energy we probably don’t have! We can all contribute in small, practical ways. Pick one thing (or more than one if you’re able) on this list.

• Share the Spoon Theory on your social media, with a personal addition if you’re able.
• Write down a short statement about how it feels to have your condition, and send it to someone you know or post it on your social media. Keep it to hand for any future time you may need it.
• Contact the organiser(s) of anything you’ve only been able to access because of lockdown, tell then why it’s been good for you and ask that they consider remaining more accessible in the future. It doesn’t have to be long or detailed, as long as they know there’s a demand.
• Write to your MP about your experience with healthcare services, benefits, and/or any other relevant issues.

If you can think of anything I’ve missed off these lists, please do share in the comments!

One of the contributing factors to my writing this post was discovering this morning that places of worship are allowed to open today, followed by my pastor announcing that our online services would continue when they begin physical services again. I’m currently drafting an email to him explaining my circumstances, expressing my support for this and for physical services to continue being livestreamed after lockdown.

I’m sure most people reading this have never heard of PKU, but it’s been familiar to me throughout my entire life, as I have the condition myself. Phenylketonuria or PKU is a metabolic condition that means the body can’t break down phenylalanine (a component of protein) properly, so it builds up in the bloodstream and inhibits brain development. It’s screened for at birth, and the main treatment is a low protein (technically low phenylalanine) diet. Without the diet, children with PKU grow up severely brain damaged, so it’s absolutely vital!

Since yesterday was International PKU Day (I didn’t manage to finish this post until today), I thought I’d share a bit of my experience with PKU, and an idea of the challenges that we face.

High protein foods, e.g. meat, fish, eggs, cheese, most legumes and pulses, tofu and nuts are all on the “red list”, meaning they can’t be eaten on the diet. Medium protein foods such as bread and pasta are also on the red list. The PKU diet is made up of fruits and vegetables; measured amounts of lower-protein carbohydrates like potato and breakfast cereal; and specially made low protein foods: breads, flour, milk, pasta, rice, and others; plus a protein substitute which is essentially phenylalanine-free protein, with added vitamins etc to make up what we don’t get from our food. Here in the UK, we’re able to get these products on prescription, but in most countries in the world they have to be purchased at huge expense.

Now you have a basic idea of what the diet is (in reality, it’s hugely complicated and this post could fill a book if I let it), I’ll tell you a bit about my experience living with PKU.

The diet has been a challenge my whole life, more in some times than others. Some of my earliest and most vivid primary school memories involve hiding my food behind my lunchbox, being teased because of my protein substitute (then a foul-smelling “blackcurrant” paste), and envying various items my classmates were eating. At secondary school, we tried to discuss the possibility of my having school dinners, but my year head just couldn’t understand why it required planning and in the end we gave up and I kept having packed lunches. Temptation became a big thing when I started sixth form college, and I fell into really bad habits of sneaking food I wasn’t supposed to. There’s a long story attached to that, but it’s a bit complicated for this post.

It’s recommended “diet for life”, although in practise many adults come off diet, for various reasons. I can’t remember when I decided that I wanted to, at some point in my adult life, come off diet. (Temporarily, just for the experience.) The reasons I started seriously considering it are also very complicated, but I think the clinching factor was timing: I thought it better to risk having to redo my A-levels if I experienced side-effects, than redo a degree, or lose a job. I came off diet for just over a year during my third (out of four) years of A-Levels.

It is impossible to describe the experience of coming off diet. It took me a while to get used to some kinds of meat, but otherwise I liked most of the foods I’d never had before. I think I was a bit of a foodie already, but I’m much more so now!

How adults are affected off diet varies widely; it’s currently not possible to predict how someone will fare eating normal food. I never noticed any obvious symptoms, perhaps because common symptoms overlap with ME/CFS which I also have, but in case it was making a subtle difference, I went back on a year before I left for university.

Most of my struggles during university were because of my ME (that’s probably for a different post), but as time went on I had less and less energy to manage my diet. The thing about the diet is that you can’t just go out and buy a ready meal or a loaf of bread (In those days, I didn’t like any of the ready-made breads on prescription, so had to bake my own); almost everything has to be made from scratch, which is extremely time-consuming and energy-draining. During the latter part of my first year, with coursework deadlines looming, I felt that something had to give. I couldn’t stop going to lectures or trying to do my coursework, and by that time I had no social life to sacrifice, so I paused the diet so I could channel the energy it took into getting my work done. With a deferral this took until the end of the summer, so I was effectively going back on diet at the same time as starting a new year, in a new house on a new campus, and that was a really bad move in hindsight. In the end I decided I was going to have to give up the diet until I had finished university completely.

My three-year degree took five years, thanks to my ME, and by the time I’d finally finished it, my overall health was much worse than when I’d started. I’d exhausted myself by doing it. I don’t regret doing it, because I learned so much and really needed the independence for my own mental health, but I could tell I wasn’t going to handle going back on diet yet. That was back in 2015. Although my health stayed pretty much the same between then and two summers ago, my mum made an offer which completely changed things: to batch-cook stuff for me to fill my two freezers with.

After weeks of brainstorming food ideas and searching online to find low protein replacements for the high protein foods I’d become so fond of—delighted to find that the rising popularity in veganism has brought about a lot of vegetable-based creativity—I decided to give it a go. It took months of preparation, because I’m a cautious person (and prone to indecision) and wanted to plan as much as I could in advance to save running into problems later.

I’ve been back on diet since August last year, and initially it was quite exciting and I was able to experiment a lot with new recipes, cooking more than I expected as I was prioritising my diet over everything else. Unfortunately it became much more difficult as a sleep issue drastically reduced my energy, but I managed to keep the diet up. I’ve been taking valerian drops since around February, and my energy levels have improved again, which couldn’t have come at a better time! Lockdown has made the diet more challenging in the area of getting hold of the right food, even now I can finally access delivery slots, and now the hot weather is sapping my energy again. But I’m confident I can keep going.

I didn’t notice any problems of being off diet for all those years—though an MRI scan showed “white matter” in my brain—but people around me have reported an improvement in my general mood since returning to my diet last year. I feel good about being back on it, as I used to suffer guilt for what being off might be doing to my brain. As a bonus, my protein allowance is now 10g of protein a day—very little compared to the 70g the average person eats, but phenylalanine tolerance varies widely and that’s comparatively high! Many other adults are on 5g or even less. That’s two and a half Weetabix, or a large portion of McDonald’s fries, or a quarter of a tin of baked beans.

Although the UK is, as I understand it, the best country to be in if you have PKU, that doesn’t mean the system is perfect. A lot of medical professionals have trouble understanding that we can’t just get our special prescription foods in the supermarket like gluten-free products, so many patients have trouble getting prescriptions. Parents of children with PKU have to spend hours cooking and preparing meals, communicating with schools and other carers, and doing home blood tests with their children; they are under a lot of pressure to get a very complicated treatment right, and psychological help for them and for PKUers themselves is limited. Medical diets have only in the last few months been recognised as “treatment” by the Department for Work and Pensions. The sugar tax has led to the more widespread use of aspartame, which we can’t have as it’s made from phenylalanine. The National Society for Phenylketonuria and a PKU APPG (All-Party Parliamentary Group) are campaigning for better awareness and provision for people with PKU.

Having PKU has shaped my life in ways I can’t fully measure. My feelings about it differ from day to day; I appreciate it far less on the days when I don’t have the energy to be creative, or on the days when I have to put in a prescription and wonder whether the pharmacy will be able to order all the items without an issue this time. But no matter my feelings about PKU itself, I will always be hugely grateful for the diet, as without it my brain would be permanently and severely damaged.

I thought I’d finish this post with a short list of some of my favourite low protein meals/foods:

Low Protein Lasagne: made from scratch from low protein lasagne sheets, vegetable filling (Mediterranean veggies or mushroom mince are my favourites), tomato sauce and low protein “cheese” sauce made from low protein milk, cornflour and crushed Quavers. (Yes, Quavers!)

Low Protein “Fish” and Chips: I’ve only had this once so far as it’s a relatively new invention and very fiddly! Based on a vegan recipe using banana blossom in place of fish, it’s coated in low protein batter (made with low protein flour and low protein milk) and deep fried. The chips have to be counted as part of my daily protein allowance.

Low Protein Philly Cheesesteak: Jackfruit (to replace steak) fried in Worcester sauce, onion and garlic, with mushrooms and green onions, topped with melted vegan cheese. (Vegan cheese is a wonderful invention! Unlike most vegan/vegetarian substitutes, it’s low protein. It didn’t exist when I was on diet before; real cheese was my biggest weakness when it came to “forbidden foods” and I would have struggled much more to return to the diet without this stuff!)

Low Protein Chocolate Chip Pancakes: Low protein batter (made from scratch from low protein milk and low protein flour) is great stuff. (Much better than low protein pastry, which is really difficult and more often than not falls apart when you try and shape it.) Did you know cocoa powder has protein in? So chocolate has to be counted as part of my daily allowance. There are a couple of low protein chocolate substitutes available on prescription, but I prefer to save my allowance for real chocolate.

I should probably leave it there—I’m making myself peckish …

See also Key Worker Appreciation: Medical Manufacturers

Once again, I’m posting something I wrote several days ago, with additions at the end to bring it up to date. I’ve had a few crappy days on a personal level so haven’t been able to do the relevant fact-checking and research prior to posting before now.

~*~

Written 9/6/20

Monday morning, I saw the news reports of the statue of the slave trader Edward Colston in Bristol torn down by protestors and dumped in the bay, followed by discussions on the criminal and moral implications of the actions, and what the moment might mean for other such statues in the UK.

Watching it, I remembered an episode of the American political drama Designated Survivor, which involved a debate about a similar statue. One of the African-American characters in the debate had this to say:

“Child, you mean well. You declare “This is racist” and “that is racist”; but you are young, white, and living in America. You don’t know what it’s like to walk in my shoes, and I won’t always be around to tell you. But that statue will. It stays.”

Later in the episode, after a compromise was (eventually) agreed to move it to a less trafficked area, he said,

“I believe we sanitize history at our peril”.

At the time of watching, I couldn’t really make up my mind what the right thing to do would have been. But coming back to the real-life event this week, I greatly admired what the Bristol mayor had to say in response. I’m afraid I can’t find the interview now, but he made some great comments on the importance of putting the statue in its historical context, and remembering the moment it had been torn down as a historical moment as well. I can’t find that specific interview, but I found a different one here.

I’m not going to condone criminal damage either, though I admit I don’t know whether the statue would ever have been moved/removed democratically, from what people have been saying about the amount of time it’s been debated for—though given the growing demand for change right now, maybe it would have been. But we’ll never know that.

Personally, I think that putting these pieces in museums—where they serve as an educational reminder of our past rather than a tribute to the historical figures—with the complete historical context, is the closest to a perfect solution available. I’m sure not everyone will agree, and I realise it’s not my opinion that matters. But given the segment the next morning with teachers discussing how history is taught in our schools, it sounds like that would be a starting point—it can’t end with that—for tackling the wider issue of how we as a nation view and teach our history.

~*~

Written 12/6/20

Since I drafted the above, many things have developed in this area—I can’t cover them all, but some stood out to me.

The morning after writing the above (Wednesday), I saw that a statue had been removed, this time officially. Again, I can’t find the segment online to check which one it was and whether it was considered a temporary removal to protect it, or a permanent one, and what happens to it now if the latter. In other places, some statues are being temporarily protected while debates go on as to long-term decisions. Others have had the decision made not to move them.

This morning, there was a news feature on the statue of Robert Baden-Powell, founder of the Scouts, and the comments made by the officials involved (again, can’t find the video) were interesting but didn’t sound very sympathetic to the offence it causes. That he apparently backtracked from his Nazi support is definitely something worth recognising, but that doesn’t necessarily take away the offence people might feel at its placement. I did find it interesting that it was only erected 12 years ago, and have to wonder if the people who made that decision were fully aware of all the less admirable aspects of his life at the time. Regardless of where he stood at the end of his life, the meaning of it having a place of honour to people needs to be carefully considered and, again, I think a museum with the full historical context to be the best move. But again, it’s not my decision.

Deviating slightly from statues, but nonetheless on a similar note, I was quite shocked at the news story that an episode of Fawlty Towers and episodes or full series of other shows have been withdrawn from certain streaming services.

I disagree with this decision—not because of my views on the content itself, which I agree is not acceptable. But, at least with the case of Fawlty Towers (I’m not familiar with the other programmes), removing or editing the content to make it fit in with modern values is the wrong move. It’s about sanitising history again.

Programmes like Fawlty Towers represent the era in which they were made, in which that kind of content was deemed acceptable/funny. It’s not now, but removing it completely is to pretend it, and those attitudes, did not exist. A few years ago I came across a screenshot of a message that said:

“The cartoons you are about to see are products of their time. They may depict some of the ethnic and racial prejudices that were commonplace in American society. These depictions were wrong then and are wrong today. While the following does not represent the Warner Bros view of today’s society, these cartoons are being presented as they were originally created, because to do so otherwise would be the same as claiming these prejudices never existed.”

Rather than censoring historical fiction, I think streaming services should accompany them with a suitable notice like this one—perhaps less wordy, but something that clearly states something along the lines of “This programme contains [type of content] which is representative of the time it was made”, perhaps with a disclaimer like the above if the service feels inclined to add it.

We don’t want to endorse prejudice, but we shouldn’t sanitise history either by cutting it out of anything that was made in that time. We need to put it in its proper context for viewers—to educate young people who didn’t live through that era, to open discussions with children about why it’s wrong, and to serve as a warning for people who don’t want to view that kind of content.

I realise it may be a different scenario when we’re talking about more recent programmes. I don’t have an answer for that. But if we start removing anything in fiction (or non-fiction, for that matter) which doesn’t fit in with today’s views, I think that’s an incredibly slippery slope. With all the discussion at the moment on better historical education, I hope we can get the balance right between the extremes of endorsing racism or pretending it never existed.

I welcome discussion on the subject, and anyone willing to share educational resources.

~*~

Written 13/6/20

I was glad to see on the news this morning that UKTV have decided to put the Fawlty Towers episode back, accompanied by some kind of content notice.

~*~

Apologies for not being able to provide links to the specific news segments I’m referencing! Not everything is available or findable on Youtube or the BBC Breakfast site. And my ability to take thorough notes while having breakfast is also limited.

The other day I saw reported on the news that Chester Zoo had announced they may end up having to close due to loss of income because of the pandemic. It woke me up to the fact that many non-profit organisations such as zoos and aquariums who do important conservation work are economically endangered right now.

I have been more aware of these places via their online presence during lockdown, and I appreciate the accessibility it affords to people who cannot get to those places. But I also realise now, which I had not thought of before, that they would also financially suffer from losing visitors during lockdown. I want to do something to try and help them survive, so I am writing this blog post, to draw more awareness and urge anyone who is able and cares about the conservation of our planet to consider doing what you can; whether that’s just posting about it on social media, donating, fundraising, or even volunteering.

I checked out Chester Zoo’s website, and they’ve posted the following:

“Not being able to open, despite being a huge outdoor site with all the necessary safety measures in place, is having a devastating impact on our much-loved zoo. We’re heading towards debt in excess of £24m by the end of 2020 – this will financially cripple us. We need to raise £1.6m each month to keep going.” (See the full message.)

There are various options on their site for financial support; donations and animal adoptions. (There is also lots of educational information and activities available, for adults and kids alike.) They also have a JustGiving page. If you can’t afford a large donation or a commitment to a regular one, an idea I had would be to donate £1 (or other amount if you want), every time you watch something of theirs on Youtube—and the same goes for other places. While writing this I decided that watching educational things from zoos/aquariums, museums and other cultural things was going to be my regular “reward” for productivity. (I drafted this during my first virtual writing retreat, where we got asked what our reward would be for hitting our goal, so that’s where that comes from …)

The “virtual experience” I’m sure will change things in terms of income of visitors once these places re-open. I expect there will be some who decide that rather than forking out money for a trip, they can stay at home and watch on Youtube, which will be income lost if they had been able to actually go. However, I think the videos and so on will actually reach more people—not just who can’t go in person (which I’m usually in the category of), but maybe spark interest in people who can go but otherwise might not have. It could also spark more interest and awareness in what they are doing. Personally, I think that, provided they survive, this could be a very good thing.

I keep missing Chester Zoo’s livestreaming, but am making an effort to try and remember to watch one of the videos now and again. At present I haven’t done much of this—my default choice during my downtime is fictional escapism—but I’m going to make more of an effort to watch more educational things in my downtime. Not just because it’s something I am very good at overlooking as an entertainment option, but because I want to be more knowledgeable about the world I live in, in many areas. The same applies to history, museums, different cultures; one of the reasons (aside from the enjoyment factor) I want to do my series of virtual holidays. (Still working on those!)

Extinction is something that I’m aware of and concerned about, but has never been the most forefront of environmental concerns in my mind. I am very concerned about the environment generally; I believe we’re supposed to be the caretakers of creation, but have done a terrible job. There are so many issues within the wider issue of the environment, it’s hard to keep track of them all! Plastic has been a big thing for me, especially since my disability means I have to rely on it more than other people. (I will probably blog on this at some point; I’ve been wanting to create more awareness of how disability and environment issues interact since before the pandemic.) Food-related areas, such as over-fishing, pollution and pesticides, is another big thing for me—perhaps because food has always been a huge part of my life, growing up on a restricted medical diet. But I want to be more consciously aware of other areas, and find ways of helping from home besides signing the odd petition that comes into my inbox.

This mention of Chester Zoo came around the same time as a message that Britain’s honeybees are under threat from another predator, the Asian hornet. On my holiday to Norway several years ago, I learned a bit about species being under threat from invasive species—I don’t know whether this has always been an issue, or just since humans started travelling more widely and enabled creatures to hitchhike with them! But it’s something I want to know more about, and have made a resolution to try and educate myself more.

I believe this pandemic will have many positive impacts on the way we think about and treat the planet. But there are also many negative impacts; whether it’s the necessary increased use of plastic to protect ourselves, the threat of closure to organisations who do vital work, or other things I haven’t thought of yet. Now is the time to think about what we can do to play our part in creating a better future, in any way we can, however small.

Links:
Chester Zoo
List of zoos in the UK (includes aquariums, wildlife parks, etc)
Bees: Information and ways to help
Causes of bee decline
Explore.org: Just discovered this site (via Youtube suggestions); lots of nature livecams, plus educational materials

I felt the need to write this to get it out of my head and off my chest, so to speak. I was not originally intending to post this anywhere public, though I was thinking of writing a poem that expresses these thoughts. However I have chosen to post this here.

I have chosen to be bluntly honest about my own reactions, and the areas where I know I need improvement. A couple of days have passed since I wrote the majority of this, and things have changed in that time! Rather than tear what I already wrote to pieces to try and bring it up to date, I have chosen to leave it as it is, and include some additional paragraphs at the end.

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Written 5/6/2020:

My first, instinct reaction when I heard about the protests in America, was nothing to do with the cause of the protests. My first thought when I saw the news footage for the first time was something like “Seriously? Huge crowds of people packed together in the middle of a pandemic, in the country with the highest infection rate?”

This was a very personal reaction, because as a vulnerable person, I’ve been having—I admit it—resentful thoughts towards the crowds of people flocking to leisure and beauty spots to enjoy the fine weather, even if they were technically socially distancing. I do not feel safe to go out. My anxiety can barely handle my parents dropping off shopping. I live in a quiet enough area that I feel relatively safe walking around the block and to the post-box, but just going through my block of flat’s communal area to get there or into our communal-but-I’m-the-only-one-using-it mini-garden, is a mentally demanding task, so I don’t do it very often.

I mentally labelled the protestors the same, “irresponsible”, and I know that’s not right. I try very hard to avoid judging people, but I am a work in progress.

I accept that not all the people protesting are probably there for the same reasons. That’s not to say I don’t still have mixed feelings for those who are protesting in peace out of a desire for justice and equality. I’m sure some of them, like many people still irrationally do, feel they’re invulnerable to the virus. The majority, however, have probably taken the decision that the personal risk to them is less important than the cause they’re fighting for, and though I understand that a lot more, I have to ask—what about the people they come into contact with if they catch the virus? The ones who did not make that very personal choice? Is every protestor who made that decision completely isolating when they’re not at the protest?

And then there are those who are violent; either because they think it’s justified, or because all the strains of the last few months have got to them, or because they’re not there because of the cause and have jumped on the bandwagon.

I don’t personally know any numbers about potential casualties or injuries caused to either protestors, police or other authorities clashing with them, or innocents who happened to get in the way. Common sense tells me that some people must have got hurt during all of this, and that’s not right. People’s livelihoods have also been destroyed, at a time when livelihoods are under threat anyway.

My feelings about all of the above would, I think, be the same no matter what the cause of the protests. However I will freely admit that I might empathise more with the cause if I were myself black or from another ethnic minority group.

Before you label me “racist”, hear me out.

I said empathise, not sympathise. I have deep sympathy for George Floyd, his family and friends, all the victims of racial hatred and their loved ones, and everyone who experiences racism. I believe in racial equality. But I have no personal experience to help me empathise. I’m not from an ethnic minority group, nor are the people closest to me. I don’t have many people I’m close to full stop, and I’ve grown up in and mostly lived in a relatively ethnically un-diverse rural area.

That said, I do know what it’s like to be in a marginalised minority group. And I’ve asked myself a question several times over the last few days: would my heart be breaking more if it were a disabled person who had been killed?

The answer, I hate to admit, is probably yes. Not because I don’t believe both are equally unjust, but because that is something that I can relate to on a more personal level. I don’t know what it’s like to be judged and labelled from a cursory glance at your appearance. And I believe it’s humanly impossible to fully understand, no matter how empathetic of a person you are, something like that unless you have personal experience of it.

I have what I suppose would be an inverse: I have an invisible disability, so when people look at me, they don’t see anything wrong. And many healthy people have a problem comprehending that just because I look well, doesn’t mean I can’t be in pain, or exhausted to the bone, or require a seat or to skip a queue. Even those who can grasp that, I think humanly cannot fully understand what it’s like to be on the receiving end of the “you don’t look disabled” attitude unless they have experienced it themselves.

I can be horrified at something and know it’s unjust, even feel outrage and sadness, but the injustices that naturally hit a person hardest are the ones they can most personally relate to. I am only human in that respect.

But the last couple of days have opened my heart more. For days I have been praying for justice, and an end to the protests. I don’t know if every time I asked for an end to the protests themselves, or an end to the need for protests; I can’t remember. I’m not sure exactly which I meant at the time either, though in my heart I have always wanted racial equality. God, however, can see deeper than the words I say and even my conscious intention (which are often not the same thing). Then yesterday morning, I saw the announcement that the rest of the police officers at George Floyd’s arrest are being charged, and I was overwhelmed with relief. I thanked God for justice. My relief, however, was not just that justice was being done in that instance, but because in that moment I naïvely thought/hoped that the protests would end. Right afterwards, there was an interview with Dominique Walker, the sister of a former victim like George Floyd, and herself an ex-police officer.

I don’t remember all the details now (my memory is like that), but it spoke to my heart. It also opened my eyes to the fact that racial discrimination is more prevalent in this country than I had believed. Although I know it still exists, and my impression is it’s more prevalent in America, our very (in some ways overly) PC society has led me to believe that it’s rarer than it is.

I don’t have all the answers to that. But I think there are things that we as ordinary people can do. We can raise our children to respect all human beings; to show care and compassion to all. We can remember and explain the atrocities made in history and why we need to learn from them rather than airbrushing them out. We can set an example for other people to follow. We can love our neighbour as ourselves.

Later in the day, I sat down and did a writing exercise to try and get some of these thoughts out of my head. But I still need to get all of this out, now.

This morning also had an impact on me, as I saw a long Facebook post from my brother, who’s been living in America for the last couple of years, from last night. He made a statement that there would be peaceful protests in his town, and he wanted to join but couldn’t because of his circumstances. He mentioned some law in his state, but I don’t know the details of that as I write this. I am hoping to talk to him some point soon (though that’s difficult with time zone issues), and ask him what he thinks of rallies in the midst of a pandemic. I hope to have a meaningful discussion with him that challenges my own thoughts where they need to be challenged. But he also condemned the violence, and made some very good comments about the cause. I personally don’t get all the politics of racism (especially not American politics) so I hope to get him to explain that to me a bit better as well.

It’s the combination of both of those events that have prompted me to sit down and write this instead of doing necessary household tasks before my physical energy evaporates. Because I need to get all of this out.

There’s a worship song I’ve known for years called “Hosanna”. I have sung, spoken, and written out the words on Facebook, as a prayer before from time to time. But the last couple of days I have meant it more than ever.

Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like You have loved me
Break my heart for what breaks Yours
Everything I am for Your Kingdom’s cause

The full lyrics are here and a Youtube video of the song is here.

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Written 7/6/2020:

Since writing the above two days ago, things have developed. Protests here in the UK (and other countries) have grown. The UK government has issued official advise asking people not to gather in huge crowds because of the threat of Covid19. Towards the end of yesterday, violence broke out in London, and people were injured.

I admit I still have mixed feelings about the protests. I respect those who drew out squares in the streets to help protestors stay two metres apart, but notice that is not the case everywhere. I worry about and pray for the protestors and the people they come into contact with, and pray this won’t contribute to a second wave.

I beg for people to find other ways to protest. Safer ways, with less human contact. Please. I fully agree with the need for change, and I recognise that mass protests might be the only way to get some people to sit up and take notice. I myself am one of the people who did not realise how much change was needed until all of this happened. But there must be other ways to do this!

As I write this I find myself thinking of the climate change school strikes, but in the current situation I realise that’s not exactly a practical example! However there must be alternatives that can be creatively implemented, that will have the desired effect but without the threat of virus spread or people getting hurt. As a creative, though, I have to admit I don’t have any immediate ideas. If something occurs to me, I will post it.

Since writing the first section, I also came across some interesting posts in a writing forum I’m a member of. One was a very striking and moving poem, though I’m afraid I can’t link to it as it was shared in a private space for feedback. There was also discussion on how non-BAME writers can write BAME characters in a way that feels real to BAME readers. This is something I personally have wondered about before, and want to get into, now more than ever. I intend to hunt down some good resources to help me in that area.

All in all, this has been a very eye-opening week for me, and I hope it has been for many others as well. I’ve been writing all along that I expect many positive changes to society to come out of this time, and I sincerely hope and pray that consistent racial equality is one of them.

Stay safe.

#BlackLivesMatter

In the midst of a pandemic, it’s all too easy to get lost in the overwhelming negativity everywhere—from the news, from the statistics, from scared peers. It is a very frightening time, and a lot of bad things are happening. I’m not denying that or saying we should put our heads in the sand. But in amongst all these drastic changes to our lives, I see a multitude of opportunities for positive change in our society. I want to not just highlight these, but encourage everyone to help keep them/bring them about in the coming months.

My title for this post was originally going to be “Silver Linings” (as was the title of this blog) but during my livestreamed church service yesterday morning our pastor said something that really resonated with me: “Crisis and opportunity go together”. I’ve been putting this particular post together since before I posted anything else on the blog, because I keep coming across things to add to it. I expect to keep adding to it!

Community Spirit

I’ve heard many people say that this crisis has brought people together; introduced neighbours to each other; infused people with the desire to help other people. I was born in 1990, and so I don’t remember a time when life was like this everywhere, but I know many people who have seen a gradual decline of a sense of community over the decades. And now it’s coming back, being compared to the time of the Second World War. “We’re all in it together.”

Well, we’re all in life together as well, whether or not there is a pandemic, and I think it’s important not to lose this wonderful thing as the crisis ends and people’s lives go back to normal. I think many people will have discovered for the first time how rewarding it is to help others and have a closer relationship with their neighbours.

Greater Accessibility

This is something I’ve already addressed in a previous post—that the population generally is having to adapt to not being able to leave their homes, and that has opened so many doors that I believe should remain open, and we need to make sure that they remain so. So much can be done online nowadays—and while it’s not a full substitution for in-person experience, it is the closest many people can get, and those opportunities should not disappear once they’re not in as much demand.

If organisations, institutions and companies can reach people who can’t leave their homes, then they should continue to do so wherever possible. Events should still be livestreamed; education and cultural centres should still be available virtually; online social gatherings should still take place.

Health, Social and Welfare Reform

Health

In the UK we are blessed with a National Health Service. Although it is a blessing that so many countries do not have, it is flawed and inconsistent and has been under threat in recent years. Now is the time when we as a country are waking up to the realisation of how much of a blessing it really is, and I think will be the turning point away from under-funding and the threat of privatisation.

With regards to other countries around the world, especially ones where the population has to pay extortionate amounts for healthcare and medicines, I genuinely hope this will also be a turning point for reform in their own healthcare systems.

Welfare

Many more people are now relying on benefits to live on, or need them and are having trouble getting them. Again, I’ve discussed this before. The system has been broken for a long time, and an issue which has been under discussion and the subject of campaigning for years.

Perhaps now with the much greater demand, there will be an increase in the pressure for those with the power to address and fix its fundamental flaws, and make a U-turn on its policy of filtering out as many applicants as possible.

Homelessness

Councils all over the country are housing, or have housed (I haven’t found confirmation of completion yet) the homeless as part of preventing the spread of Covid-19. If it can be done, why should it be only temporary?

I realise that a lot of places they’re being housed are places like hotels, which would normally have guests, and so can only realistically be temporary. But we’re not going to get back to normal overnight, and the time it takes to lift the lockdown should be used to find alternative housing.

In the Metro article I linked to in a previous post, I want to highlight a quote from Crisis chief executive Jon Sparkes:

“We also need to see a package of support so that, when the outbreak subsides, the outcome is not that people return to the streets. The Government has committed to ending rough sleeping by 2025 – this proves it can be done in 2020 if we make it the priority it deserves to be.”

Change in Environmental Attitudes

Air Travel

I love travelling as much as anyone, and I long to see the world—but it’s not leisure travel I’m talking about here. The other day Prince William made the point in an interview (I can’t remember the context) that he thinks businesses which would normally have their workers flying on a regular basis are finding that many things (not everything) can be done using technology instead, therefore reducing the reliance on air travel—and therefore, reducing carbon emissions.

Food Waste

Although there was reported a spike in food waste by panic buyers a few weeks ago, I have since heard reports of a drop in food waste as, with the difficulties getting food products and the health risks of going out in public, people are learning ways to manage their cooking and waste less.

Since there are personal financial benefits from doing so in addition to the environmental benefits, I can’t imagine that many who have learned to reduce their food waste will want to return to former habits once the pandemic is over. I also wonder if many people who have taken up gardening/started growing food for themselves will continue doing so.

Awareness of Mental Health

So many people who have never before had—or considered themselves having, is probably the case for many—mental health difficulties are suffering from widespread anxiety, and it’s becoming talked about more and, I think, more widely viewed as a mental health issue. I will be posting more on this at a later date.

Appreciation of Key Workers

It’s being said over and over again, that occupations that have previously been looked down on by society in general, such as cleaners, refuse collectors and many, many others, are finally getting the recognition they deserve.

I would like to take a moment, while on the subject, to mention that the NHS is not JUST made up of doctors and nurses; and medical scientists go far beyond research. Read my post on appreciation for biomedical scientists.

A personal experience yesterday reminded me of another overlooked kind of key worker, and inspired me to write this post.

Behind the scenes of hospitals and pharmacies, we have the people who work daily to make medicines, equipment and medical nutrition for patients. For every product that is dispensed from a pharmacy, there have been key workers who strived to create it, package it and send it out. And in these times, that must be more difficult a job than ever, as are most.

One area of this close to my heart is medical nutrition; specifically medical food that can only get to patients via a prescription. And I’m not talking about gluten-free products which are now a common sight in supermarkets—I’m talking about much more specialised food.

I don’t know how many medical conditions there are that require this, but I have PKU, which requires an extremely restricted low protein diet. Various companies make low protein bread, pasta, flour, and various other foods, for which there is no commercial alternative, which are a necessary staple of our diet.

Yesterday I checked up on my first prescription request since the lockdown, and encountered a problem with my pharmacy being unable to get what I needed from the wholesaler. When my mum and I went to the website of the company who manufactures the food, we found a detailed statement on their current situation, including the following:

“We have several people within the business trained in the area of baking to allow us cover should we need it.”

“Current classifications describe the team here at Firstplay as ‘key workers’ so we continue to work hard to provide the low protein community with low protein foods, low protein fresh breads & protein substitutes as well as maintaining our excellent customer service.  We have recruited a new member of staff to help us increase stock levels and to allow the business to maintain our usual service levels to customers, wholesalers & chemists.”

“We fully appreciate obtaining low protein food products is difficult at the best of times so if anyone has any concerns with obtaining the products of Promin, Taranis or Metax please get in touch with us.”

“We’re also ramping up the production of the Promin brand products to ensure we have plenty of stock for the coming weeks which can be distributed either in house or used for wholesale export orders.”

When I filled in an online form to ask for help, someone replied to me within half an hour.

These essential people are working so hard and most people don’t even know they exist; yet without them, people with my condition would be going without food necessary to sustain a diet that prevents brain damage. They, and manufacturers of all necessary medical supplies, deserve a lot more recognition.

My mum is a biomedical scientist, and finds it frustrating that even now, when key workers are being appreciated and recognised more, that her field is still being overlooked.

When people talk about the NHS, the emphasis is always on doctors and nurses—who, while playing such a vital role, risking their lives on the front line and are definitely worthy of that recognition, are not the only kinds of NHS workers. Nor are research scientists the only medical scientists, yet when ‘the scientists’ are referenced, it’s always the research scientists who are meant.

Every day, biomedical scientists keep hospitals running through crucial laboratory work—diagnosing, monitoring treatments, matching for blood transfusions. And yet they’re still overlooked—by the media; by the public; by schools and supermarkets. The Institute of Biomedical Science had to release a letter stating that biomedical scientists are key workers so some could get access to education for their children and NHS shopping hours.

So next time you think about key workers—next time you clap for the NHS on Thursday evenings—remember there’s more to healthcare than doctors, nurses and research.

And if you know of other key worker roles whose fields are not yet widely recognised/appreciated, please let me know so I can do a post for them.