Below I will be discussing the Rwanda bill, as well as Rishi Sunak’s planned overhaul of the PIP benefit and his statements on “sick note culture”. Before I became ill, I was involved in political activism. From the age of 12, I attended local hustings with my Dad and raised my hand to ask questions of those seeking to be elected. I always got picked because I was by far the youngest there every time, and when the microphone was passed to me, I would stand up so that everyone could see me and hear me speak loudly and clearly my question. Before I chose to study Medicine at university, I deeply considered going into politics to try to change things from the inside. My spirit is still thirsting after social justice and I can’t but help wanting to have my say, though I am usually not able to do so. Here are my two pennies’ worth on a few issues:

The Rwanda Bill being passed:

The UK High Court and Supreme Court ruled that Rwanda was not safe for refugees and therefore it would not be legal, under UK law or under international law and agreements, to transfer refugees to Rwanda.

Our government has sunk to such a level of moral turpitude and corruption that they have forced through a bill that says the opposite of the truth. As if just saying something makes it true. According to them, Rwanda is now a safe country to send asylum seekers, simply because the bill says it is.

Even when courts are now given evidence of the danger Rwanda poses to particular refugees, judges have no power to do anything. They have to effectively stick their fingers in their ears and pretend that it is safe.

As of 8 December 2023, the UK government had paid a total of £240 million to Rwanda, mostly to fund Rwanda’s economic development, though some was set aside for initial set up costs for relocating individuals. All wasted for a scheme that will not accomplish what the Conservatives want (the deterrence of refugees travelling to seek asylum in the U.K.). A few hundred deportations per year won’t stop people coming. They’re fleeing for their lives and have no choice. I would have hoped that our country would have the basic decency, moral values and compassion to not turn away those in the most dire need and peril. We have become a selfish nation indeed. There is no integrity, no sense of right and wrong anymore. Vote the Conservatives out.

Yes, times are hard for everyone. But it is usually the poorest in this country who are the most generous, with the little they have; they are usually the most welcoming to the stranger. The most in need in this country, they do not want others in the most need from other countries to be abandoned. They have more in common with them than out-of-touch wealthy politicians. Shame on our government for what they have done.

Rishi Sunak’s “sick note culture” and plans to overhaul PIP (Personal Independence Payment – a benefit given to those who are disabled and/or chronically ill if they’re eligible):

First, this is creating a false dichotomy between those who work and those who receive benefits. 38% of those receiving Universal Credit, for example, are in work, as of January 2024. Rishi Sunak is trying to create antagonism between those who work and those who receive benefits, even though these groups overlap massively.

Wages are often not high enough for those in work to be able to afford the risen cost of living: housing, electricity bills, food prices etc. Lots of people in work need benefits to survive and even then, some have to make the choice between heating and eating.

For the percentage of disabled/chronically ill who are still able to work, PIP is a benefit payment that allows them to stay in work. Being disabled/ill has so many unavoidable extra costs: specialist equipment, home adaptations, assistive technology, mobility aids, wheelchair-accessible vehicles, medication costs, higher utility bills as a consequence of an illness/disability, items specific to a particular disability/illness (e.g. incontinence pads and adult nappies for those with incontinence) – the list goes on. In order to stay in work and pay these costs, PIP is needed. Even then, there are barriers to essential services and barriers to employment. Companies are often unwilling to make reasonable adjustments. Without PIP, which Rishi Sunak wants to scrap, these people will no longer be able to work and they could well lose their independence altogether.

For those, like me, who are disabled and/or chronically ill who are NOT able to work (which can happen to anyone at any time), the loss of PIP would also be catastrophic. These payments are used to procure items necessary for our very survival. Taking away PIP might not immediately result in deaths, but gradually, it would. Probably quietly and out of the way, where nobody is watching.

Personally, without PIP, all the aids and items I need to stay alive would be taken away. I would have no way of going to toilet, for one thing. This is just one example amongst many severe consequences and ramifications of the loss of PIP, which would be disastrous. Many disabled and ill people are panicking right now as a result of Rishi Sunak’s announcement about PIP. We fear for our lives and quality of life.

A chief concern is that Sunak is proposing that doctors are to be stripped of their right to issue sick notes. Even in their overworked state, doctors actually don’t mind issuing sick notes. They are on the front lines and usually know who needs them. When people who are not doctors are given the job of issuing sick notes – “independent assessors” – who often have no medical training or they have to strictly follow quotas or are being incentivised and strong-armed into finding people “fit for work”, in the past has led to chaos, cruelty, absurd rulings and injustices. People who are terminally ill have been found “fit to work” by these incompetents.

Benefit fraud is very low (the DWP’s own estimate of fraud for PIP, for example, is 0.2%), especially compared with tax evasion and avoidance. It is ridiculously difficult to claim benefits and PIP. Long forms, requiring evidence upon evidence upon evidence from doctors and test results and other professionals. Many, like me, are too ill to fill in these forms themselves and need someone else to do it for them. Thankfully, I have someone. But many don’t.

Do not scrap PIP, Rishi Sunak, unless your intention is to gradually kill us off (‘us’ being disabled and ill people). At this point, I wouldn’t put it past him. He can’t seem to accept that there are people who simply cannot work. By taking away benefits (ESA, PIP etc) from disabled people who cannot work, Sunak will be forcing us into poverty or death.

It is no mystery why the number of ill people has increased. Covid infection, especially repeated Covid infections, has left so many with long-term health problems (including Long Covid), damage to multiple bodily systems and has put them at increased risk of strokes, blood clots, heart attacks, seizures and immune collapse. Also, because of the Conservative’s destruction of the NHS, wait times have increased significantly, so of course there will be more ill health in the country as a result. There is no “sick note culture”, just more very ill people.

Other issues:

There is so much going on in the world. I am powerless to stop genocide or climate change. After writing to MPs, signing petitions, and going on marches (if you are healthy), I don’t know what can be done by ordinary people with no power. We are left to watch in horror until it is too much and we have to look away sometimes, let down by cowardly politicians, who have no empathy, morals or will to help. We are left with an unfit for purpose voting system that needs reform to make it fair and properly representative. But still, I will always use my postal vote, for all it’s worth. What else do we have?

<p>The post Using my voice for good: let’s talk politics first appeared on Jenny Rowbory.</p>

As you would have gathered from the post-surgery update (you can read it here), I desperately need another operation to fix what happened in the last one and being fused into the wrong position without the correct amount of intraoperative traction. I’m fighting for my life every day.

It’s not only the stagnation of lymphatic fluid and reduction in the volume of blood flow to my head and body that continue to be massive problems now (though those are my main problems), but also the operation doesn’t seem to have fixed the dangerous instabilities of my atlas and all the cervical vertebrae below it. Every day brings new deterioration with loud snaps/cracks issuing from my neck, bringing with them further movement/subluxation and a new position of my skull and vertebrae. My skull is sinking further and further into my neck, being pulled downwards with a force so hard that it’s too strong to pull back against. My atlas and skull are constantly clicking in and out, subluxing. It’s the same with the vertebrae below. They also feel bent and buckled beneath the fusion and metal plate in my head and can’t hold the weight.

Most importantly, all the workarounds that I used to have for getting a little bit of lymph moving and getting a bit more blood through to my head have disappeared. The “magic” place on my head/neck (as described in the last update), which when lifted up, used to bring blood flooding back, has been swallowed up into a place that I can’t reach, due to the operation. If I get lucky, I can just about find a place as close to the Magic Spot as I can reach, where I can feel a small sharp spike, then use the edge of my pillowcase to press on the tiny tip of this spike and lift it slightly, allowing a bit more blood to get through. But I then have to stay extremely still, not even swallowing, otherwise I get moved off that tiny pinprick of a spike and the blood and lymph stop moving again. Most of the time I can’t even find the spike though (and it depends on what angle I’m at) and it seems to be getting swallowed up too as my skull sinks further into my neck.

That edge of the pillowcase and that spike are the things that have been keeping me alive for the last few months. Thankfully I have a hospital bed so I can raise the top of it up at an angle in the late afternoon, with my head still attached to the pillow as it rises, so that I can get some food down me and watch a bit of a TV show or film or listen to an audiobook.

I’ve struggled to breathe and swallow for over a decade but recently though, after the biggest crack and movement of my neck to date, it feels like something sharp is pushing hard in a line all across the front of my neck at the top, against the airway, pinching it almost shut. I think it’s because my skull is crushing downwards hard and so the structure of my neck at the front is being jammed up into things it wouldn’t usually be in contact with. In any case, whatever is causing it, I’ve never struggled this hard to breathe. It’s relentless and horrible to try to live through. I feel like I’m being strangled and choked.

As you can tell, I really need an operation. But everything has been held up by the pandemic. We can’t even have the initial video consultation with the new neurosurgeon because he needs new, more recent MRI scans and we can’t get them done for him because Shrewsbury hospital are only allowing ‘urgent’ issues to use the MRI, given the pandemic. So we’re currently in a battle to get them to categorise my situation as urgent.

So the next step will be the MRIs, then the first consultation with the new neurosurgeon (one of the only ones in the world that I would now trust to fix me, after the last disaster) via video, as he’s in New York. Given how hard New York has been hit by the pandemic, if the new neurosurgeon agrees to take me on, I don’t know when it would even be safe to go to New York for an operation. This is all assuming I’d be able to fundraise a very ridiculous amount of money to go there and get the operation. The amount I’d need to raise (though we don’t know how much until we’ve had the consultation) seems impossible and everything feels a bit hopeless.

I’m just focusing on trying to stay alive every day, with new levels of disability, new levels of complete exhaustion and weakness ever since the operation, the like of which I’ve never experienced; it seems that my M.E. has deteriorated.

You may have seen me around on twitter and facebook a bit more than usual. I tend to use them as distractions when I’m most scared. However, it has come with a hefty price and the muscles in my arms and hands are pretty destroyed and weakened by the increased use. They’re seizing up, cramping, twitching and spasming, so I may have to force myself to cut back on the social media. It’s just such a lifeline though that I use to pull me through. But I don’t want to lose the use of my hands completely so I may have to be more sensible and not reply to people who tweet me or who leave comments on my facebook posts, even though I desperately want to.

In other news, I’ve been quoted in a New Statesman article! Three weeks ago I was asked to give a quote in response to the question ‘how does it feel to have everyone suddenly enter the same space of social isolation as you and doing stuff online?’. I sent a really long quote to the journalist, but, understandably, she was only able to use a couple of sentences of it in the actual article. In case you want to see my full quote, I’ve included it below:

At the beginning of the lockdown, when there was a massive influx of people coming online, over and over again I saw many saying ‘I’m so scared’, ‘I feel lost’ or ‘my anxiety is bad’. My initial reaction was: ‘is there anything I can do to help them? Is there anything I could say that would make them feel even a tiny bit better in this situation?’. That night, words and phrases started echoing around in my brain and wouldn’t relent. In the morning, this is the poem that poured out of me as a result, which I put onto my website immediately and shared the link on social media: https://www.jkrowbory.co.uk/2020/03/new-poem-for-right-now

In the next few days, with the majority of people at home and suddenly available online, I was excited at first to have more people around. But then I felt lonelier than ever when I realised that I was still excluded because of how ill I am (I can’t speak so I can’t do phone or video calls; I also can’t keep up with any text communication for long (or sometimes, at all) because my hands and arms get destroyed and damaged quickly and people don’t understand when l don’t reply or only reply once or twice and then fall silent). Unlike me, everyone else still gets to keep in contact with their loved ones, their family and friends. They get to chat with them via calls or messages. I knew that it was a big change for them, going from face-to-face, physical contact to this, but to me, it wasn’t isolation; they still could have the communication and love that human beings crave and need.

Suddenly all the things that I haven’t had access to while bed-bound and for which I have been asking for years to be made available to all those who are bed-bound or house-bound, were suddenly magically possible, now that abled people wanted them. Those who are ill and disabled have always been told ‘tough luck; that’s impossible’ or ‘that’s too inconvenient’.

Online classes and so many other resources (that I’m personally too ill for, but which I know other disabled people need), both for adults and children, became available to watch online; some theatres made plays available to stream; Universal Pictures are making cinema releases available to watch at home. It was upsetting because before Coronavirus, there was already a whole population of people, bed-bound and house-bound, who needed these things. But we weren’t considered important enough or of value enough; nobody cared about us in our isolation or if we had access to things.

A more trivial example is that film plots always got spoiled for us before they finally got released digitally or on DVD because everyone else had seen them at the cinema already and it was almost impossible to avoid spoilers online.

I’d been asking a couple of authors for years when their books were going to be made available as audiobooks (I’m unable to read physical books or e-books), only to be fobbed off repeatedly with ‘soon’ or ‘I have exciting news on my impending announcement on the audiobook very soon’, only for them never to emerge and years passed. Then suddenly, the day everyone went into lockdown, one of these authors announced that all his books were now available on audiobook. Funny that. It does make you feel worthless though and like nobody cares about disabled and ill people.

Plus everyone else in self-isolation (those that are healthy) have so many options available to them. They can write as much as they want (a book if they so choose) without their hands seizing up, they can watch as much TV or as many films as they want without it being too much for them and they can read as many books as they like. They can dance or jump around, sing, do creative things, learn new skills or knowledge, exercise, make silly videos to share online, walk around the house etc.

There are so many new things popping up online for people to join in with to feel less alone, but they are still inaccessible to me and make me feel even more different to all the “normal” people.

I’d give anything to have the type of freedom that everyone else in self-isolation has. It feels like an embarrassment of riches to me.

You can find the full New Statesman article here: https://www.newstatesman.com/science-tech/coronavirus/2020/04/isolation-covid-19-coronavirus-lockdown-disabled-ill-elderly

<p>The post April 2020 Health Update and Other News (I’ve been quoted in the New Statesman!) first appeared on Jenny Rowbory.</p>