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On International Women’s Day, March 8th, 2020, I stood on a mountain looking down across a snowy world. The day was crisp and bright and beautiful, and around us I could hear men call their female friends and family to congratulate them on the holiday. I think of that as the last normal day.
Four days later, I was in class when a student asked about a recent news post and I checked my email. Presumed positive COVID-19 cases. The first in the country. All universities to be closed for three weeks.
We sent our students home, watching our busy, bustling mid-semester campus fade into empty silence. Then restrictions were put on movement from city to city. Around the city. In and out of campus, including our faculty housing block. On leaving the house for other than essential reasons.
So I sat in our enclosed balcony and watched the world come to rest.
Yet it wasn’t rest, not for any of us. There felt like frenetic activity was happening, overworked medical practitioners and healthcare systems worldwide run ragged for endless months, teams of scientists working at light speed on vaccines, public health officials briefing daily, hourly, updating restrictions and sharing news.
And on the other side of all this hectic motion, a draining force, too. People felt depressed, listless, unable to motivate themselves for action in the face of an invisible and life-changing danger.
And I couldn’t relate to either group. I wasn’t an overworked medical professional heading out for exhausting shifts day after day. And I wasn’t paralysed to be home and unable to help, either.
Instead, I watched the unfolding events incessantly, tracked statistics, shared articles, wrote pages of my own work and pages more in emails to colleagues and students. I was, odd as it might seem, excited, even elated, to be a specialist in the history of medicine living through the major global medical event of our generation.
That energy and enthusiasm, that need to be doing things, quickly led to clashes with others. Academia, for all its popular image of sole researchers sitting alone in offices they only share with books, depends heavily upon communication and collaboration of all kinds.
My energy was getting in the way of those collaborations, and in the way of myself. I was sending too many messages, starting too many things, writing way too often and way too much. To the point where it wasn’t fun anymore. To the point of inducing headaches from the implacable need to be doing things.
And then there was a moment. Like being on a roller-coaster when you have been climbing ever upwards, you hear a clunk, and know you are about to fall. And it was a feeling I had felt before.
The next few days were dark. I had no energy, no enthusiasm, no ability to take pleasure or comfort in the things that I usually would. The previous week I had been flying; now I could barely get out of bed. And I was trapped, seemingly forever, in this prison of despair.
Then, as suddenly as they arrived, the darkest clouds dissipated, my mood shifted again, and I knew I needed help.
Nearly four years prior to this, I had been given my initial diagnosis: Obsessive Compulsive Disorder. That diagnosis, hard as it was to deal with, had opened up a world of support. I kept my usual appointment with my therapist, and told her – I need an assessment for Bipolar.
We found a suitable psychiatrist, I was assessed, and the results came back. Preliminary diagnosis of Bipolar Affective Disorder, Not Otherwise Specified, co-morbid with OCD.
My Bipolar symptoms fall into the category of “mild” or “less severe,” that is, compared to the symptoms other people experience, not that bad. But as many people have noted with “mild” COVID-19 cases, the terminology used by medical professionals to categorise illness obscures the lived experiences of sufferers.
Mild illness can still be gut-wrenchingly hard to live with.
I sat with my diagnosis for a few days, gathered some courage, and went back to friends who had already supported me through one diagnosis, to tell them the new one.
It wasn’t something I wanted to do, but it was something I needed to do. Because for me, living with this means living with other people knowing about this.
Disclosing is hard. So why have I written this, why put all this out here for anyone to read?
Because at one point in my life I couldn’t bear to disclose my OCD, and was sustained by those who could, and comforted by hearing how other people live with their conditions. And now I do feel able to disclose, so I feel it is an act of solidarity with everyone who struggles with their mental health to do so.
If one person reads this and feels less alone in their diagnosis, feels better able to ask for the help they need and deserve, this will be worth it. So here I am again, disclosing.
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The post My Bipolar Pandemic: How The Frantic Energy of Lockdown Led to Diagnosis appeared first on The Unwritten.more
Since March 2020 I have been collecting strands of disabled wisdom about the pandemic and trying to gather, weave, and share them. Disabled, fat, older, poor, immunocompromised, and chronically ill folks have been oracles well before this global public health disaster and continue to this day as institutions and leaders treat marginalized communities as disposable.
With the Disability Visibility Project I feel a keen urgency to publish as many pieces about the pandemic because ourmore
Trigger warning: this article features discussions of COVID-19 deaths, especially of disabled people and what is considered by many as eugenics.
Imagine witnessing death and destruction on a large scale. You see it on rolling 24-hour-news, in newspapers and on social media. It invades every part of your life as you see a daily death toll and the stressed and desperate faces of frontline staff.
Now imagine deciding that the pandemic you have witnessed is no longer as much of a threat based on anecdotes alone, based on the experiences of just a few people. My grandmother smoked forty cigarettes a day – and I never thought to consult her on lung maintenance. As a disabled woman with basic empathy and humanity, I’m horrified.
I’m appalled that another human being could see the welts on frontline doctors and nurses faces, their tears and their exhaustion and think so little of that sacrifice.
Instead, they write of wanting to contract that virus – that has taken so much from all of us – because they’re one of the few people they know that still hasn’t had it.
It feels like the ultimate example of privilege, disdain and just plain, destructive arrogance.
We are currently in a mass disabling event.
We’re told that the Omicron variant is milder – but the idea that we should want to get COVID-19 and get it over with is flippant and simplistic.
We’re also told there is a version we all want, a week of feeling unwell, and then we’re back to normal, with antibodies. There are no damaging effects. However, disabled people have been frequently ignored throughout this pandemic, and we don’t have the privilege, confidence, or, I would argue, arrogance of simply expecting such an outcome will apply to us.
Six in 10 people who died from COVID-19 in 2020 in the UK were disabled. I shielded because I feared what COVID-19 could do to me – I still do. Shielding has negatively affected my mental and physical health.
To be cut off so abruptly from life’s ordinary, mundane tasks, to live in a constant state of fear – to exist and live in a few rooms. It was desperate, but I knew the importance of maintaining my health.
I know what it is to lose it. I have a condition that means I often feel I’m battling my brain – fighting its instincts and whims. If I’m lucky enough to get the idealised version of COVID-19 that we should all want, then that’s it. Luck.
It’s playing Russian Roulette with everything you are. The highest stakes game possible – because you want to return to a version of life that is convenient for you – in which you’re able to forget. In which COVID-19 complies with your timetable despite its legacy and reputation.
You can forget that people are dying, forget that people are vulnerable, forget that some people – and we don’t know who, whatever your arrogance and those ridiculous anecdotes tell you – will die.
Or there is the possibility that they will experience long Covid. In November 2021, it was calculated that 1.2 million people living in private households in the UK, 1.9% of the population, are experiencing self-reported long COVID.
In their quest for forgetfulness, people are given a platform to argue that Omicron is “milder” than other variants of COVID-19 – a phrase seemingly designed to suggest that it’s no longer as much of a threat as long as you’re “healthy.”
I wonder if they would be willing to say that to the families who have lost loved ones, would you encourage others to take that risk if you were confronted by their pain, by the reality of the way that COVID-19 has ripped through their lives?
I’m sure they are envious of your ability to say such a thing. I can’t imagine the arrogance and naiveté it would take not to fear it – and its potentially life-altering consequences.
We know that when you say we should try to get back to normal, you are saying that we are the collateral damage, with little regard for the fact that we are the largest marginalised group, and we exist in every demographic.
Before you articulate your view, consider the actual, irrevocable consequences of your actions the power of your words:
Spare a thought for chronically ill and disabled people watching our already hugely strained NHS have to cancel their treatments and support – after enduring a pandemic.
Spare a thought for the NHS staff who are exhausted and at breaking point – after enduring a pandemic.
Reread these statistics and think of every family in unbearable pain – every individual who has struggled and suffered, every story. Because, of course, if you’re envious of people who get any variant of COVID-19, you haven’t been paying attention – but we knew that.
149K people have died from Covid-19 in the UK.
6 out of 10 people who have died with COVID-19 were disabled.
Those of us who have already lost so much are sacrificing and continue to be sacrificed. So, the idea that you feel able to suggest you have “Omicron envy” is not surprising – disgusting, ableist, inhumane, but not surprising – it is just the latest example of a certain willful, self-centred arrogance.
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The post You Should be Thankful you Haven’t had COVID-19, not Envious appeared first on The Unwritten.more
The last two years haven’t been fantastic for anyone — but they’ve been awful for disabled people.
On January 2, 2020, Prime Minister Boris Johnson shared a tweet that is dripping in irony, one global pandemic and two variants of concern later. “This is going to be a fantastic year for Britain,” he writes, giving his best Churchill impression to the camera as he sticks his thumbs up as if to represent some kind of universal reassurance to the nation.
Two months later, the country went into a national lockdown — with The Times later revealing Johnson’s numerous attempts to dodge and delay taking action against the pandemic.
A 2020 Select Committee report found that 60% of disabled people struggled to access essential supplies during the pandemic. According to this report, disabled people also struggled to access things like health and social care and specialist education facilities, leaving them disproportionately impacted by the pandemic.
While the clinically extremely vulnerable remained trapped in their homes, long after “eat out to help out” and the arbitrary “tier” system kept them in the dark about what was safe for them to do, the Office for National Statistics found that between January and November 2020, disabled people as a whole accounted for 6 out of every ten deaths (59.5%) involving COVID-19.
This statistic is grim within itself, but when one considers how, according to disability charity Scope, only 19% of the UK population are disabled, it is abundantly clear that they are a group that the pandemic has disproportionately impacted — and are paying with their lives.
COVID deaths have peaked and troughed, but while those who die from COVID following “underlying conditions” are often brushed off as a footnote in comparison to “normal people” dying, it is clear that something more sinister is at play here.
At the end of 2020, the first phase of a report by the Care Quality Commission found that Do Not Resuscitate orders were being imposed on disabled people without their — or their families’ — consent.
It begs the question of when Jonhson reportedly said, “let the bodies pile high”, what exact bodies he meant.
The Government’s lack of concern over disabled people’s struggles continued into 2021, with their Health and Disability Green Paper spending page after page trying to justify why public spending on disability welfare needs to be less rather than more.
The proposal of merging the cruel and archaic assessment system for Personal Independence Payment with Universal Credit coming weeks after scrapping the £20 Universal Credit uplift in a move Disability UK described as effectively “slamming the door in the faces” of disabled people.
And then in February this year, The Guardian revealed the full extent of how disproportionate DNRs impacted people with learning disabilities. This included Mencap reporting how multiple people with learning disabilities disclosed how they were told that if they were to fall ill with COVID-19, medical staff wouldn’t resuscitate them.
This came simultaneously to reports of how 80% of people with learning disabilities who died in January died due to COVID, with the Government also at that time refusing to put people with learning disabilities on a priority vaccination list.
For the third time in a year, the national press recently highlighted reports of GPs issuing DNRs on disabled people without their informed consent in the national media — but the fact that this is continuing to happen, that health providers feel that they can even get away with this despite it being highlighted numerous times is incredibly telling.
The Government’s action (or instead, inaction) in regards to disabled people during the pandemic is at best, severe negligence and at worst, sinister eugenics.
So while our Prime Minister waxes lyrical about this “incomparably better” year and advises the public on New Year’s Resolutions, here’s a few for him and his Government to mull over with their wine and cheese:
First and foremost, there are the DNR orders.
Where are the public statements, condemnations and pledges to do something about this?
Buried deeply and discreetly in the depths of their website, the Care Quality Commission’s inquiry of the issue released in full in March this year (which came out a month later than it should have) doesn’t come anywhere close to tackling this problem.
Nine months after the report was published, The Telegraph found that multiple disabled people – such as people on the autism spectrum – were still being coerced or hit with DNRs against their will.
If anything, it’s getting worse. It’s bad enough that the general public pretends to be shocked by how DNRs are being used on disabled people every few months — but I’d expect more from our Government.
They need to act fast and act now: hold GPs to account, show disabled people they care by publicly condemning this state murder and enacting some – or at least any kind of action – in response to the troubling CQC report. Nine months on from its publication, we need action, not words.
Secondly, as Omicron continues to surge across the UK, they need to offer more explicit guidance and financial support for disabled people classed as clinically vulnerable.
During the first pandemic, disabled people who were clinically vulnerable were able to shield, and received accommodations in terms of accessibility of essentials and financial compensation for being unable to work in person.
But despite evidence showing that vaccine antibodies are less effective in clinically vulnerable people than the rest of the population, no such accommodations have returned. This means that clinically vulnerable disabled people face a choice between shielding of their own accord despite the financial/accessibility implications or putting themselves at real risk of illness or death on account of the Government’s lack of accommodations.
It’s irresponsible for the Government to keep the clinically vulnerable in limbo like this: they have a responsibility to give them more clarity.
Thirdly, they need to do more to tackle the social and accessibility issues specifically facing disabled people.
In April 2021, the Office for National Statistics found that 40% of disabled people said the pandemic had disrupted their access to healthcare for non-COVID-related issues. Two months earlier, they also reported that 46% of disabled people said the pandemic had negatively impacted their mental health compared to 29% of non-disabled people.
The accessibility of psychological and physical healthcare for everyone is obviously essential, but due to the disproportionate impact this lack of accessibility is having on disabled people, it is clear that the Government needs to implement a more dedicated roll-out of these services: either through more funding, or a dedicated prioritisation system.
Finally, as simple as it sounds, they just need to show that they respect us.
As anti-maskers continue to boast on social media about how they buy the sunflower lanyard online to avoid wearing a bit of cloth on their face, the Government needs to take a stand: doing more to crack down on this misuse and misappropriation of the sunflower lanyard, which, for many disabled people, is about a lot more than wearing masks.
Ultimately the Government needs to lead by example: taking decisive action that shows they want to protect our lives and actually value us as human beings.
This means that they need to speak up for our rights more, stop treating our deaths as a “lesser” afterthought and most controversially, actually follow public health rules they themselves put in place.
In 2022, the Government needs to show that they care about disabled people because if they don’t, how the hell can we expect anyone else to?
All we’re asking for is the bare minimum.
The post The New Year’s Resolutions the UK Government needs to Make for Disabled People appeared first on The Unwritten.more
Every Wednesday, I jump on a Zoom call with a bunch of writers and talk.
Sometimes we talk about professional things, like revisions, copy edits,more
“I think we’re on the cusp of somethingmore
Accessibility and the Lack Thereof in the Film Industry
Being a Black woman means there isn’t a day that goes by where I don’t worry that every action I make, every word I say won’t be judged, misconstrued, and dismissed. As a Black female film critic and journalist, I have these same worries, but they’re intensified with the apprehension that what I do and say on social media may end upmore
“We were maybe not going to save the world, but we were going to save each other.¹”: How Disabled Mutual Aid Is Different Than Abled Mutual Aid Leah Lakshmi Piepzna-Samarasinha
I want people to know that disabled people kept each other alive during COVID-19. We were keeping each other alive before COVID and we will continue to keep each other alive. But the ways we kept each other alive during COVID is nothing shortmore