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TW* Am I a burden? I cannot work. DWP scheme to get disabled people working will harm US, not help!

“…I won’t have a choice. I’ll have to commit *******. I cannot survive and work. My body and mind won’t let me”

I have read a variation of this phrase over and over these last few weeks from hundreds of disabled and chronically sick people that I know of, in the immediate aftermath of the DWPs proposal to get disabled people working… that is horrifying in itself.

This horror show, is reality.

For me? The horror is raw- being forced to work like proposed, would likely k*** me too, because my body reacts badly to stress and physically shuts me down, thanks to my autism and my misunderstood rare calcium disease. This, also, by the way, is why I have never had a traditional job and cannot work.

Society cannot stab us, and then blame us for bleeding and needing care, to survive.

Oh wait. Yes it can. It already does. Every day.

Society contributes to disabling us, makes accessibility impossible so we remain trapped in a disabled and sick, and unable to get better vicious circle and then blames us for needing benefits to survive off because nothing else is accessible to us. It’s suits them perfectly, so why change it? They don’t want to spend money on access and anti ableism and so they continue to blame disabled people for their failings, to convince the public to keep them in power.

They stab us, and then blame us for bleeding, just as much as they pretend to tick the boxes of supporting us, only to stab us in the back the moment they need to change the publics opinion.

Upon the back stabbing, and media articles that make disabled people out to be wicked and worthless, It makes me wonder, Am I a worthless eater? Am I a scrounger? Am I a burden? Am I worthy of financial support from the government to survive and thrive?

In other words, am I worthy, of human rights?

I am disabled, autistic and chronically ill, I cannot work and I cannot be abused into being a cog for the colossal machine to chew up and spit out into a late retirement, because no matter how they spin it, I CANNOT work in this society of inaccessibility and misunderstandings. Not won’t.

It’s not safe and it’s also not possible for people like me to work. Goodness, though, I’d love that privilege to be able to work and not be trapped in a cycle of poverty put in place by our government.

Just like many disabled people cannot work, and not won’t. Yet, it’s not about that. It’s about making society and the public view disabled people as the problem so they can distract focus away from where tax payer money is really going.

I think they are trying to save money, and to do that they are culling disabled people – with impossible to attain work sanctions and cuts to financial aid to human rights so we cannot survive - in a way that the public won’t notice – and may even cheer on due to misunderstandings. If they can change the dynamics of public understanding of disability – spite and hate filled, so entitled to assume fakers or misunderstand any type of disabled reality or diversity – which they have – if they can change understanding of what work is, or that work from home is now deemed bad – if they can alter the very definition of what a disability means, and then change the means in which these disabilities are assessed and who by, yes, they very well can cull disabled people, by forcing us to work, even when we reasonably cannot – because, they changed those definitions of what ‘cant work’ means, what disability means, and fed the public lies about where the tax payers money really goes. The reality is, that even those who legit don’t work, but could, is it worth making life hell and helping to kill hundreds of thousands of other disabled people in the process of getting those few to work?! NO. the tax payers money wasted on those who could work but don’t, is minimal – less than a billion - if you look at the research and compare it to where the politicians waste billions of tax payer money each year (over ** billion). We are not the problem. And even though people don’t work that could and maybe should, this is not the solution. This is a cleverly worded cull. I am one of the many who cannot work traditionally...

I’m a motivational speaker- I offer online services, I write reports by learning about preschool children I am a 121 with, I answer questions and give advice… I’m good at these things. I earn next to nothing, especially in Profit when it comes to paying my mum back for business expenses, marketing at conferences and publishing and reprinting my book. So yes, I’m good at what I do, I work hard a lot (although for very few hours a month) and yet still need benefits because my profits will never go above £800 a year. As a previous volunteer it’s never been about earning although as an adult, I’d love to be able to earn more and make a profit so I can pay my mum back, help my family out, provide for my husband and survive on work I adore.

As a motivational speaker, do you know how ironic it is that I also can’t speak ? Or think? Or learn new things or answer questions? The irony that I can be so bad and totally incapable of doing the things I can be good at is a heartbreaking reality of my disability.

Sorry, uncontrollable was the word I was going for, it’s out of my control that I suddenly lose those abilities and can become ironically so bad at them too. I have many abilities but unless they are made accessible to me, I have very little capability to keep those abilities.

Now I’ve let myself work less, do less writing less organising less chores and I am able to move more. But if I do move more I mentally shutdown. If I do mental work, I physically shutdown too. It’s a vicious circle which I have struck the valence of, treacherously walking the tight rope where I could fall into chaos and disability and sickness if I am to do more ‘work’.

Doctors may understand the extent of this but many don’t - they don’t see the prior rest and recovery to be capable and they don’t see then aftermath. They can only judge what they are told, and they are trained to look out for things patience say that don’t match the normalised neurotypical experience so people like me who are autistic and have different lived reality are judged to be liars or fakers or exaggerating.

This is bad enough- Yet it won’t be the doctors or gps that know us that will be making that judgment call of if we are worthy enough to have access to our human rights with out trying to harm or kill ourselves in the process. It’s not our gps that know us, that say yes, we can work or no we cannot. It will be randomised DWP employees who don’t know us - if they meet us we are a case study of many to them, they don’t have hours or days or weeks or months or years learning about us and what makes us who we are and our lives reality enough to make that decision of if we can work. They don’t have detail to judge us with, they have a case study like report where everything is broken down to its fundamentals - can this person, walk-yes (ignoring they can’t walk for more than 50 meters or that it takes them so long to get anywhere or that walking is so painful they can’t even think). Can they organise paperwork - yes - they filled out pip forms (even though claimants like me couldn’t fill out the form and had a carer do it for us- also ignoring the before and aftermath of such an ordeal or how long it took- it could have been months for all they know) basic questions with basic answers that ignore the overall nuances of lived reality and the cost of what it means to say yes, they can work.

So yes, how, even if I can physically move, am I supposed to describe this level of mental and physical shutdown to Someone who’s trying to tick a box and prove that autism isn’t a disability and my rare disease can’t be that bad? How? What’s worse is that in pursuing their work schedule and killing myself in the process-if I survive it - and that’s a big if (I’m not talking suicide I’m talking about my body literally deteriorating from stress) so if I survive, I won’t be able to thrive like I have been, I won’t be able to help people, I won’t be able to advocate or pursue passion because every last ounce of capability will be spent on trying to find work, working and being fired and losing out on my financial support.

And the worse is knowing that none of it - the torment or mystery or failure to work- would be our faults, and yet we would be the ones blamed and tortured for it.

It’s another stab in the back to say yes they can work, then blaming us for bleeding out when we can’t work safely because society never made work or employers or business accessible to us in the first place.

The reality being - most disabled people if they could work, they would. Likewise most disabled people who don’t work even if they could, only don’t work because they know working in inaccessible conditions would make them so much more sick and disabled - and as adults we have adult responsibilities - whether it’s childcare or caring for someone else or just being capable enough to keep up with house home chores because it’s not fair to leave it all up to your partner or parents or whether it’s just surviving the weekly food shop and demands of adult life gone wrong - yet another emotional ordeal and finically worry of the car not starting or a bus pass lost or a change in fruit loops or whatever. The dwp don’t care about if it’s safe or accessible to work, they don’t even care about the long term work of disabled people (if they did they would focus on access and not forcing through removal of rights) they only care that they can tick a box to say that ‘we got disabled people working’.

So yes. I can’t work in the society we live in, no matter how much I’d love to.

I’ve always been like this even as a child-unable to work or process like others can - as a kid my legs would stop working for no known reason and I would call them jelly legs, and give a way knee- I called the weakness in my arm floppy arm. The sickness in my tummy gloopy stomach. I would have Fridays off of school because the shutdowns made me so Sick I couldn’t go Into school even if I wanted to. And I did. Desperately. My attendance was awful at school because of this, downs to 40.% even though I tried my best to be there and tried to be able to work like everyone else, something in my brain made that impossible.

The worse part is the time I was in school I was so incapable that I was failing everything and miserable with it, blaming myself for my failures even though that failure was forced upon me by society and its inaccessibility and misunderstandings. The only time I started thriving and doing well in school is when I stopped going in as much-when I was allowed to have rest bite and recovery and I wasn’t forced to work or do homework or extra credit and was allowed

To recover. It became obvious very young that the only way I can be at my best and safest is with very little work and a lot of recovery-and forcing me to work makes me unsafe but also incapable. Why would someone hire me, when they can hire someone to do the job properly and also reliably? My skills and capabilities are not consistent.

No job will take my access needs and make them magically vanish because jobs with this much access don’t exist. Therefore, by DWP and the publics standards, I cannot work, because realistically working a couple of hours a month and being shutdown the rest of the time, is not being able to work – especially hen the work you can do is only accessible via other people who understand and create access by doing the organisation, the paper work and the in-between jobs so I only have to read out a pre written speech or talk or write. As much as I can’t work, employers can’t realistically hire people like me without risking their entire business crashing. If they hired all the disabled people like me, business would not stay afloat-despite our best efforts as employees to help and do our jobs. If we can’t work, it’s not safe in the long run, to make us work - for anyone, least of all us, and it wouldn’t be our faults either.

As an example - some disabled people could work, minimally, but the fall out would be inexcusably inhumane for them.

“I wish I could be at home all day like they are!” Trust me, NO, no you don’t. I am also passionate and motivated and hardworking. Yet I will be judged as lazy and scrounging and careless and selfish, because there’s no understanding of disability dynamics. People see me at home every day, sometimes bed bound, sometimes sofa bound, and think “shes got it easy – I wish I could stay at home all day and do nothing like them” Trust me… no you don’t, because the moment that escapism become reality, you’ll realise how much you grieve the person you used to be and how naïve you were to overlook and take advantage of your privilege and abilities so much that you even considered wishing that you didn’t have to do any of it. The difference between have to, must do, and can do and choose to, is astounding. When most non disabled non chronically ill people stay at home and do nothing, they choose to – its self care and escapism, but they mix that choice up with disabled people who have no other alternate because they are merely trying to survive. So they judge us all as if we have a choice. A choice to be at home. A choice to not work, a choiuce to be ‘lazy’ or ‘scrounging’. They see it as an advantage, an added extra we get that they deserve. Trust me. No one deserves this. As much as I make the most of it, and I try to be mindful and content, generally, I wouldn’t wish this reality of being stuck at home, sofa or bed bound and too disabled to safely work on my worse enemy… not that I have one, but you get the point. Theres no choice – but also when you’re disabled, being at home is not the cute escapism selfcare that it is for non disabled people. For us, its mere, gritty, hard work of survival. They don’t see the agony, they don’t see the hours stuck in one place because I cant move. When they see themselves in my position, at home not working, they imagine themselves resting and lapping up the selfcare and catching up with hobbies. They see them selves able to leave their house a they please and catch up on jobs and do whatever they want because suddenly – they have time to do so. Time is different for us. Time for disabled people slows down, agonisingly with every crooked click of a clock, but it also speeds up. You can be in bed, wishing to go outside, and then you blink and you still have not been able to go outside, or shower, or do a hobby, or do anything, because you never got the choice to, and you didn’t have access to someone to help you make it possible. Time is different because in your time you get to choose what to do with little thought of the implications or consequence. With their time, non disabled people don’t have to think about choosing to shower or go out for a short walk, or choose whether to go in a shop or do chores and shower and eat. Their time is spent however they wish because time doesn’t drown them. It’s not like that for us. If they looked through my window, They won’t see me pottering or doing hobbies or choosing to do nice things with my time at home, because I cant do those hobbies or nice things. (I cant access hobbies unless someone sets it up for me, even if they are on a desk in front of me – but also if I am too disabled that day, there’s nothing I can do. Theres no choice to it). They don’t see me reading, because I can’t (I cant without seizing or sleeping). They don’t see me watching tv and being cosy and safe and happy and at ease… because every waking moment is filled with pain, and exhaustion so steep that every time you blink you could fall asleep – constantly stuck in the sleepy realm of just drifting asleep – except there’s no escaping it – and that’s a good day because the bad days you’re not awake to be seen, bed bound. it's not relaxing. Its horrible, to be at home, unable to do anything, when all you want to do is be outside, and help people and be active. Its horrible to be unable to do much alone, when you are generally fiercely independent as a person, to be unable to do anything, when you are so motivated and ordinarily would be at the gym multiple times a week. Its horrific to have abilities and wishes and dream and be unable to work to get that reality within grasp.

So yes, because this misunderstanding of dynamics and disability diversity, and time and what it truly means to be at home not working and disabled all the time, people seem to judge that we have all the time and the choices and the abilities to do better, and we just choose not to. they want time out from the relentless of life and its chaotic work misery - that’s understandable. But we want time out too. This isn’t reality. We never get time out from being disabled. We never get a day off just surviving, or an hour off to make choices with no implications, we don’t get the time to escape – because we are disabled. Work, is a privilege and something many disabled people like me wish for… but theres not much choice when disabled people have complex access needs and a gaslighting society is in the workforce too, making even the most accessible of spaces inaccessible to work. even at home – where’s the access, where’s the choice to prove I want to do ‘the right thing and work and am worthy of financial aid to human rights to survive’ if my disability is complex - mental, emotional and physical?

The only reason my work as a motivational speaker or online role model or IEP / diagnoses observational report writer, is accessible to me is because I am my own boss and I control the flexibility and work flow. I let my self work a limited time per term. Maybe a few hours every other week, with one week a month a 'big' thing - by this, I mean a fully accessible speech or writing sessions which people have made accesisble for me. If it has to be more - for example the autism shows - it’s followed by a month or two of basically nothing.

Generally - I am in control so I can make my abilities and work accessible to me - I book a day for a speech and make sure there’s nothing before or after it. In the 6 weeks leading up to my work day I cant shower more than once a fortnight (I have baths for pain relief as part of my recovery though), cant and dont leave my house, socialise or do anything much. In the 4-6 hours or work that month in the lead up, I write, but I am Mostly bed or house bound so I can be able to do so. Anything counts as work to me.

When I’m really disabled even just scrolling social media is work. Work that makes me so dizzy and in so much pain I can’t move any limb at all. Cant feed myself, can’t shift positions, can’t move. Bed bound. Generally, in the lead up to a big work event like a speech or work observation - I cannot email people, I can’t call people, I can’t text people, I can’t scroll social media or research or contact people. I can’t do anything.

Even then sometimes I arrive at my speech and I’m so sick and so disabled that I cannot talk. My voice will be slurring and I’ll tumble to put words and syllables together. In fact- the only reason I can do my job in this case is because it’s a pre written pre practised speech. There’s no new things my brains has to consider or connect so I can power through. The moment someone asks a question though and I am shutting down.

So people like me who can’t walk more than 50 meters will be working from home… will we indeed? What work is that? Online? Over the phone? The other things I can’t do alone.

Even my own work I do alone - the physical writing - after only a few hours my arms starts to swell up from over use and become immobile feeling like I’ve torn a muscle. It’ll be cold and come to touch and burn ripped with pain. Everytime. No idea how or why but if I work at a computer or on my phone it’s nearly guaranteed.

Being a tax payer means you are more protected against the onslaught of stabbing because they don’t come after you and de mean your worth, dehumanise you, punish your human rights, and villainise tax payers as much, like they do, disabled people who cannot pay tax, even if they wanted to pay tax. I’d love to pay tax and contribute to the improvement and accessibility of society. I’d be honoured that my money could go on schools and childcare and education and charities and access and healthcare and support and mental health and everything in between. But I can’t and that’s not a failure of mine, but a failure of society’s.

If I was enable to, I could maybe one day. But forcing me into work without access, while removing human rights, and making me sicker, and challenging the definition of what contributes to ‘disabled’ won’t make me enabled - it will disable me further no matter what society’s opinion on what makes someone disabled is.

I know my disability and they don’t. It’s should be as simple as that, and yet it isn’t.

Some people could work but don’t - sure -but they are a few and far inbetween. There’s people that fake disability too - but those people are mentally disabled too with something called Munchausen syndrome which is a legit disability that isn’t created to get money or aid or support. They fake because they are mentally unwell and dont know how else to get support or manage there defence modes. its incredibly rare, only a few in the country! Sure there’s fakers and non workers, and if you look at the graphs you can see they are barely 4.0% of where tax payers money actually goes. And in that 4.0% is the tax payers money helping people who don’t work for whatever reason - among those who fake and could work, are those who cannot and are innocent.

Is it morally right to villainise all of us, and risk harming all of us while fighting those who slip through the cracks? No. Because thousand of disabled non workers will die or become more disabled and sick as a result of this, and that will be inhumane. Not to mention the same graph shows that tax payers money being wasted by politicians and not us.

What the DWP is proposing, is like putting bleeding disabled people who cannot swim into the ocean just to catch a few sharks. They have to swim (work) to stay afloat even though they can’t reliably or safely, and they could still get eaten by the sharks they’re baited to attract. Why are we being punished and put at risk, for the sharks that won’t work? No amount of money wastage should warrant harm like this, and if people don’t understand the true harm that will come to disabled people, they are not in a position. People say “if they genuinely can’t work they have nothing to fear’ well that’s not true because they are making the ones who judge that inaccessible and ineffective so people who genuinely cannot will be forced to out of pure misunderstandings, and tick boxes. So those people who don’t understand the true harm that will come to disabled people and the long term sick are not in a position To judge whether it’s morally okay. Sadly, those with privilege and little lived experience of the disabled reality in this cutthroat world, won’t understand, and may rally behind the politicians thinking it is not only okay but safe and acceptable too. It’s not, it’s a slippery slope to eugenics and faschism, which in the process WILL harm and kill thousands of disabled people. It’s a type of culling, worded to make it seem acceptable.

Blaming disabled and chronically ill people for not paying tax and not being able to work is madness because it’s not their faults they cannot work - it’s society’s failure to make work safely accessible and fairly paid. Yet they couldn’t manipulate the public into doing what they want, if they let media print the truth, could they? They don’t want to justify spending money on access and human rights because it means less money for things they want (like lining their pockets, or the pockets of their international supporters). So they keep the machine turning while stabbing everyone in the back and convincing everyone that the problem is disabled people when the problem is the people in power refusing to create real access.

Tax payer money is not wasted on people who claim benefits, because if we didn’t have access to it (human right care support from benefits) , our blood Would be on everyone’s hands - the governments, and also the tax payers and voters, for believing the lies and letting the eugenics happen.

Forcing disabled and long term sickly people into work will k**l hundreds of thousands of us, when our deaths and deterioration could have been avoided.

Yes-looking for work - IS WORK.

The dwp are proposing we find work, proving it everyday or every week and apply to all jobs available to us and accept any job that says yes. The work behind this, when you already can’t work, is torment.

Filling out forms is work, trawling Google and websites and researching is hard work and it is also inaccessible. Looking for jobs, is work. I faint just googling the stuff I want to, even when I am stress free and feeling peaceful and happy. I have no chance of the work involved in looking for jobs when I’ll be so stressed and burnout and shutdown to the point of not even functioning.

If we can’t work, we can’t look for jobs either because that’s just a different type of work our bodies and minds won’t let us safely do without huge physical mental and emotional fall out.

Will people like me be punished and penalised and our benefits removed if we don’t prove that we are working everyday looking for work and also accepting the jobs.

If I looked for work and applied for a job and they said yes, this doesn’t mean it’s accessible or safe, it means they had an opening to fill and a box to tick to say they’re inclusive for disabled people. It’s not long term and the moment they realise I can’t work they will fire me.

Wheelchair access and physical access is the least of my concerns and yet that’s probably the only thing the DWP will focus on as they try to diminish autism as a disability so they stop spending money on making the world accessible to us.

They have to spend money on making the world accessible for disabled people - so if they change the definition of disabled, they remove so much of the spending needed to create access.

This means that a job the DWP will deem as suitable for me will still be very inaccessible for a multitude of reasons that I cannot control.

Instead of creating access they will blame and stab us instead. It suits them quite well for us to die, in a way that they can reasonably blame us for in the eyes of the public. Conspiracy may say that they are doing tit to cull disabled people with the intention to kill us without it looking like eugenics, and those conspiracies could well be correct.

Eugenics is deep rooted into society, as is ableism and racism and classism.

Our privilege has always been used against us so we don’t fully understand the atrocities done to underprivileged people different to us. They rely on that so they don’t have to spend money making change where it matters. They want us believing their lies and racist and ableist and divided so we don’t really for change where it matters.

As conspiracy’s go, I don’t think it’s far off from the truth.

I can’t even fill out a simple contact form on someone’s website. Anything I want to do I cannot access. Anything I need to do I cannot access. My own pip benefits claiming form I could not process the questions or the answers yet alone fill it in. I needed my mum and sister to do that and I’m lucky they understand me so well for the answers to be accurate. I collaborated too and gave assets too, but they made it accessible. In this way, it was necessary to survive and yet I could only do some of that work because it was made accessible to me. Those accesisbilities are not granted to everyone. They rarely are.

Tell me I have infusions to book, which I need every two weeks, as a matter of life and death, leave the booking to me and watch as I lay in bed dieing and not even processing why.

Likewise, removing people’s medication because they won’t accept jobs that are inaccessible or harmful and cannot work, is also killing disabled people and making them less able to find safe accessible work.

According to the lies of the media propaganda against disabled people, pushed by the DWP, yes I am, un worthy of human rights.

I like to believe that we are far from faschism and eugenics in but really, we are sleepwalking back down hill into a pit of inhumanity, and it appears that people are either clueless or totally careless, or powerless to change it.

Let’s break it down: why cant I work?

. I can only ‘work’ for so many hours a month, safely: this is what that looks like: I have work to do:

Chores, speeches, observations and reports for the nursery I am a 121 in. I do speeches a few times a term and observations once a term.

An observation, will be spread over several months of random snatches hours here and there in the setting, followed by days of rest unable to function. The report writing about the observations will take me hours and weeks. When enabled I work well. I am good at writing for example but writing is not accessible to me.

What do I do to be safe? I spent twice as much time doing half of one job. I either do the chores, or I shower and do self care. I either do some observations and make notes or I write.

My own work - my own passion my own career my own advocacy - is not accessible without it least 5 people caring enough to make it happen on top of their own work.

My in person and online portions of my job is already delegated to other people. I have a tech guy. I have an email women. I have an online person. I have a finance guy o have an organiser women. I have driver and a carer for the actual care needs. All of those people make my work accessible to me as volunteers. People might say, well if they help you now they’d help you through this - sure they’d try. However- because I am my own boss in control of the work flow which means I can be flexible around their schedules too because they can’t just drop out of work or their own care duties every day at a moments notice to do things to make the work suggested by the dwp accessible to me.

If not them, who? Whatever the dwp won’t be accessible enough and would require me to access.

Some functioning and processing to access it in the first place but of course if I don’t they’d blame me for not trying and take away my only means of survival- the financial support and medication from benefits.

If the dwp want me cold calling people or selling or using online platforms, they have to care that I can’t physically or mentally do these things. People judge that because I send emails, I can work, it least from home - Case in point- my emails. I get so overwhelmed receiving emails that o shutdown to the point of not functioning at all. It’s not a choice. Emails get unprocessed for weeks at a time, because even if I try to write in that time I can’t process what their words in their email says. I then can’t write. For a writer sometimes I really can’t write. I’ll read it back and think that somehow a reception age child got into my emails and started writing. Emails, take me hours to write. Even if I have a template, each email cannot take me less than 2 hours to write, because it takes me so long to process the information and word to make sure I’m answering their questions or enquiry efficiently. I can’t do this alone, though. Someone has to go through my emails with me so I can attempt to reply because I get too shutdown trying to process what reply wen with what person... another point: People judge that because I ‘do’ social media (barely!) I can work from home – the reality is that someone has to do my social media work for me, because I cannot. I need someone to help go through my social media, find trends, help me find advocacy ideas to write about, find appropriate pictures and post whatever little I can offer, because after writing I’m usually curled up in agony with my brain so overwhelmed I’d be hard pressed to understand simple yes or no questions. If you see me

Posting on social media, no you actually don’t! You see me posting to stories? That’s an illusion and often using repeated content from previous years to give the illusion that I am in fact capable and thriving. I am thriving, but not in the way you’d see on my stories. I’d pick old saved content that best match that day and instead of creating new content we repost the old one. If I managed to read a book in a cosy sensory den my husband made that day but the only closest matching content from ages ago said that I fell asleep in sensory den - that’s what’s posted. Close to reality, but not really, because I have not got the functioning to make it accurate and because social media is so ableist. If I want to help people with my advocacy I have to post regularly to fall intro he black hole when no one sees my efforts at helping people which means I can’t help anyone.

The thing is even the jobs I am good at like writing is not accessible to me. Everything I post that you read took anything from 14 hours to 4 years to write and anything in between. Whether it’s an inconsequential tweet, saying something like “hey I support you! Blah blah” That tweets took me 25 minutes to write and then send. For others it could take less than a minute and be inconsequential- they wouldn’t need to rest for an hour after writing, they could get on with the next job. So much time wasted, when you cannot work, and even when you can.

Likewise, If it’s a longer tweet advocating or speaking about injustice, that tweet takes a minimum of 45 minutes to an hour, followed by several hours of low functioning that I become easily overwhelmed and shutdown. A tweet of limited characters is impossible for me to write quickly, effectively and without shutdown.

Thats only a tweet.

I am good at writing. It’s not accessible to me.

So yeah, social media? Super inaccessible, even though it looks like I have an account I regularly post to – which in the eyes of the misunderstanding public and the DWP, may make them judge my ability to work on an online platform, from home. Again, though, even without the social media support staff to help post, social media posting is not the same as work, having an ability to do things you like or love, is not the same as having functioning and abilities to do actual work.

People think because I charge for my work and services and have paperwork to keep, means that I can work – none of that paper work is done by me. It’s done for me, everything, organisational things, invoices, everything. I have help organising them, and yet my brain with it brain fog couldn’t process any information to help, and instead I shutdown to the point of not being able to speak or recognise my own. Some. So at the start I had the invoices written in front of me, invoice 1, invoice 2 invoice 3 invoice 4 invoice 5 etc (y’know, months of them, because I’m disabled and can’t create these things or send these things alone and have to wait for my finance guys support when he is disabled and DEFINITELY UNABLE TO WORK too) I have these 5 invoices and multiple proforma for the last 2 terms of work I managed to do, all neatly listed. All I have to do

Is read them out one by one so my finance person can type in the details. That’s it. But I can’t do it. For some reason I’m so concious of doing a good job and not wasting his valuable energy my own capabilities drop, just like they always do - even though these invoices are in perfect order and separates o mix the. Up. The organisation of one, the address of another, the booker name of another and the fee of any of the lot. I can’t process the information. Written in front of me and the more I try to communicate the more my brain just stops being able

To talk at all.

Making basic connections and thinking about things or answering questions or actively learning about stuff has me in a constant prenyscope- either pre fainting or outright fainting. Then the seizures start. The longer I try to work like this the longer I shutdown and become bed bound unable to move at all. At best I’d be housebound but unable to watch tv or scroll my phone or look at the internet because that risks a longer bed bound shutdown.

When my body needs rest it does not muck around. It forces it.

I can’t do my ‘work’ and any online speeches without my people helping, because my brain fails to make basic connections and I shutdown when it’s focused on work (or survival) even if I’ve done it a thousand times, I will suddenly be unable to work out how to use my phone, or turn on my laptop or work my laptop to get the apps in and running for my work. My focus to work on the speech itself drowns out all other capabilities, or just that day but for the week prior. That entire week I have been a sticky sweating sickly mess wrapped in a cocoon of blankets, unable to walk, move any limbs, wash, think about or do anything. That day of the speech I am

Helped in the shower to wash my hair and helped to dress and do make up with someone making all the connections for me in a routine.

Likewise people think because I am in the media every now and again, means that I can work - I cannot - I am normally very good at online radio interviews – when I am enabled to be – I have very specifics routines and demands and 121 support and transitional care to make every aspect of these work things, accessible and empowering for me – otherwise I completely shutdown and am then shutdown unable to move for days in recovery. Recently I had a radio interview, and there was just one small aspect that changed – instead of focusing solely on my radio interview in the transitional care before hand, I had to help my brother tidy up and get food. I was happy to, but it also shuts me down even though he did his very best to help me be my best. All I did was spend a few minutes prior to my interview helping to tidy his kitchen and make him food because he hadn’t been able to eat all week – that’s it – usually my only focus is the work ahead - but I sat down for my radio interview, and couldn’t process a single thought, couldn’t answer question, could not even talk about my interests or books or passions or anything every word I said with long gaps in-between, which I bad enough in person, but for radio its endless. I was so shutdown from that change and the emotional implications that I couldn’t work, or do something I can usually do well, at all. No employer would allow me the hours of transitional care between work demands so that I can be enabled. One work from home appointment, one interview, one conversation on the phone and I need hours that day transitional care with no other expectations or demands – not even self care. Even the week before that I have scheduled less demands life skills and self care – often not leaving my flat, my bed, not showering or doing anything because in my world I have to choose whether to eat, or shower, I have to choose whether to get up and dressed and clean or work. At home, I wouldn’t be able to work from home without my 121, even though, on the face of it, I am really good at said work from home. No employer would allow me a 121 that I know and trust – bare in mind a new one wouldn’t work out for me because I shutdown at change of unsafe people – so the alternate is I fail to look like I am looking for work or working and then they can reasonable make out to the public that I and hundreds of thousands of us are not try hard enough to work so they can justify cancelling and sanctioning out financial access to human rights. Its disgusting. It’s a cull, that’s been worded so the public don’t notice.

I can’t process a routine to exist unless there’s prompts because my brain shuts down basic connections.

Likewise a social media post that is longer, used to make me so sick I was literally in hospital with raised calcium from the stress imbalance multiple times a month. I used to post 3 times a week to try and keep up with the influencer advocates around me - even though I already knew that they posted 3 - 5 times a day, that was my effort at helping others while still helping me. But it didn’t help me. I was in and out of hospital like a yoyo with my diseases. I would write posts and be miserable and unable to move for days at a time.

On the off chance the DWP find jobs that relate to our skills, and qualifications, which could pay what we are worth, that doesn’t guarantee access or capability. Which means wed be judged as not trying to keep a job when they fire us because we cannot work and there is no disability understanding or access, and then the next benefits assessor will say “but hey, you worked last month so we are not giving you benefits because clearly you can work. Find work and keep the job. WORK” No. we cant. That’s why you gave us inaccessible jobs we can work in, and then we got fired because we cant work. The point was never to get us working, but to excuse taking away our benefits to save money. If it was about getting disabled people working, there would be more on mental health, disability understanding an access. There would be more support and less hate spread in the media on disabled people.

For example, A decade ago, I was able to work in Nursery at my house as a childminding assistant and 121. I worked many days a week and loved it. I was also very good at my job, aceing all of my childcare and child phycology diploma qualifications within 3 days, when those 3 qualifications should have taken me 4 years. Not only that but it was shockingly easy and I am still disgusted that so little understanding of children and childcare and phycology goes into allowing people to actually look after children. I finished each qualification 8-12 hours after starting, because I am very good at childcare. My mum has always said - since I was 13 - that I am better with children than any other childcare professional she’s ever met, including herself. Given that she was often rated by OFSTED as an outstanding provider and won awards and knew other professionals like her, this is high praise.

Not only was I good and understood and empowered children well, to be happy and thriving no matter their circumstances - disability, trauma, social care, illness, ‘tantrums’ - I was able to emotionally regulate them too so pretty soon even the ones who were labelled as ‘no hope’ with other setting came to us and within weeks were thriving and happy. I miss being that good, at something. I was flying.

I used to be in the playroom and be a 121 to all the children. I could interact with them all, read all hidden parts, see a danger happening 10 steps before it happened, controlled risks that allow them to learn. Multiple times I’d be sat in the nursery, comforting a child on my lap, taking a toy and giving a teaching lesson about said toy to a child on my right, helping a child on my left problem solve how to build a train track, a child behind me brushing my hair had my attention, all while comforting and emotional regulating a child in a sensory tent and directing a child painting at the crafts table. There’s also a baby on my lap that I am giving a bottle to. It was all so easy.. I loved it and all children in our care were safe and emotionally regulated. No masking with us because they knew they didn’t have to. Every kid felt as if they had my full attention, even though technically my attention was split. Also no accidents in the accident book. Where as other nurseries would have multiple accidents or injuries a day we would have a few inconsequential small accidents a year. Every child had my full attention, even though my attention was split between so many. I was so good at what I did.

That was back then. Back then I could work all day as a 121 several days a week between volunteering and everything else. Nowadays, you put me in a room with children and I’m fainting just at the noise and I can barely process anything. Whereas before I understood what all the babies and toddlers were saying, now I can’t fathom even the bits that are said in English.

Whereas before my brain understood and connected their phycological needs and responses and behaviours and was making so many more connections on how to help and how to teach and how to regulate and how to empower them, now my brain just stops at trying to connect to the child’s name.

Whereas before I could direct, encourage, and role play and do much more - now I am so exhausted just existing that I find myself quiet and smiling and leaving the child be, just making sure they are safe is the most I can do. Which is nothing, compared to before - and it’s also not enough, in the working world of childcare.

My brain fog is so thick and severe now the most basic parts of what I could do before, I now can’t. Keeping children safe and happy was the easiest part of my job before and took no effort out of me. I mean, health and safety is the baseline requirement! If its difficult you shouldn’t be in childcare! Now, I can’t be trusted left alone in a room with children because I don’t process basic things like ‘there’s a table corner’ or ‘don’t throw toys’ or whatever. The more potentials my brain has to consider the dizzier I get the more my heart rate gets wild, the weaker my limbs get, the floppier and clumsy I become and the more I faint and have seizures. All that just trying to process how to verbalise “you don’t need to shout or cry at me, to get my attention. I’m listening.” Or whatever it is.

The change in my capabilities is shocking and heartbreaking for me but I know I could never do that type of childcare work again even though I was so good at it. Even when I was good at it, and capable, years back I tried volunteering at my old special need school in the preschool department - I had been hoping to get paid work, and we as a family thought that because I am so good in the nursery surely I could work in a childbearing environment with disabled children as that is my speciality. It turns out we were wrong. I volunteered at my old special needs disability school in the pre school department for 5 days a week like I was at home and yet I lasted less than a month before I was missing most days and had to cancel my volunteering time completely. I was in and out of hospital. I was fainting on the toilets. My 121s needed an extra 121 because I just couldn’t do what k am actually so very good at.

It was wild and disappointing and I was heartbroken because I would have loved to work there even part time, but for some reason that new environment just couldn’t cater to my needs. I was sick of an exhausted and no matter how good I was at home I wasn’t as good in any other setting.

It was bizarre but it’s proof of just how much the environment makes a huge difference to capability’s. Even when I was at my most able and capable, I couldn’t do basic childcare work in a different setting that was actually pretty accessible in most ways. Just not enough, and so I couldn’t work.

Nowadays though, if these proposal were to go ahead, the DWP might try to get me to work in a nursery environment by looking at my history- and I’d refuse because I don’t believe it would be safe to do that anymore . I don’t think I could achieve those qualifications today. My brain doesn’t let me process or connect anything. It wouldn’t be safe, Not for me, and not for the kids. Even though my mum always said that my version of being bad at childcare is other peoples being great at childcare, because of how amazing I was at it before, but still, kids deserve better. And so do I.


Over a decade ago when I was a teenager and less sick and more capable, I did work experience where I worked one day a week for 9 months 9-5. It was voluntary and I loved my time there but I was bad at it even though I was also good at it. I was weak and clumsy and stock rotation was really hard for me. I couldn’t understand basic paper work or financial things. At that age I didn’t even know tax existed. I barely understood the general thing of globalisation and capatilism. I was good at memorising ingredients to stock products and matching ailments to what products and general salesmanship, but I would also sell things to people without including tax and misunderstanding the deals on. I would wrap stock for customers after they paid and accident out things inside they hadn’t paid for because I couldn’t process the receipt list and the stock list and what actually went inside. Again I can read and read well but processing was a hole different issue.

I can’t process like other people can- especially not in overwhelming environments like a shop or public place with other people - During stock rotation, I would muddle up boxes of products, putting things in the wrong place at the wrong time. Misunderstanding all instructions and prompts and specifics because I was already mentally shutdown in a Sensory overwhelmed environment of just existing in a shop. and multiple times while ow as working so hard and so carefully I ended up putting the same stock k had taken off the shelf and putting it back on because my brain gets so easily muddled of what it needs to do and I don’t make connections.

So yes, on the face of it I could ‘work’ for 6 hours a week.

But safely? No I couldn’t.

I’d talk to shoppers and stock rotate and generally work-badly-I would have been fired if I was there for any longer. Then I’d get home and the rest of the week I would be so exhausted and in so much pain I was asleep and unable to do anything else apart from visit the hospital. Then with every new work day that came around I’d be less and less capable and more and more determined and motivated- motivation doesn’t push me through shutdown though, pushing through when my body and brain needs rest and recovery only makes me less capable and more disabled when I could have been enabled to thrive with my disability if I was given a supported chance to access human rights and aid, without forcing myself into harms way.

So yes - I could work - This was over a decade, ago, way back when my diseases were not so severe. Now, I know there’s no chance I could do work like that, without getting fired and without needing time out and recovery time and so much more. Now, work like that would only be accessible if it was an hour a week, and with flexibility to cancel and leave early. The grounds would have to be wheelchair accessible too. I wouldn’t be able to do stock rotation or handle products or wrap products or do any of the physical things I used to do because of pain and weakness. I can’t use my arms in any way like that for longer than after minutes. Mentally, I shutdown and faint and have seizures the more I try to process difficult information. So a customer could greet me and even just processing the need to be polite and process their actual request, the matching of their need to product which once was I was so good at would now have me nearly fainting and needing rest because my brain doesn’t let me think like that anymore. I

Know because k have tried so many times over the years. People come to me knowing my expertise on matters like this for that shop brand and they are shocked when I faint just trying to match them with a product that could help.

Likewise, I’d also need care support to get me to and from the work because public transport is inaccessible to me. Not just because of my wheelchair, but also because of the people. I’m severely agoraphobic because for the best part of 5 years everytime I left my home alone for a walk or something, I would become ill and in desperate need of help and the general public would leave me crumpled on the floor, for hours, begging for help. It was traumatising to be dehumanised so frequently and so dangerously because so many times I was in severe need of medical aid and yet strangers would look at me so full of

Judgment, and because of my autism if they tried to talk to me I’d be so slurred and broken in speech and wild and I calculated in my moments they would assume I was drunk and leave me there. When you’re ill like me and you have a rare disease that has the component of potentially falling into. A coma due to calcium, fainting all the time and needing help in public, only to be ignored every day and everytime is horrendous . This alone is why I can’t leave the house alone even though I always want to be outside and in nature. This also makes me unpredictable. An employer no matter how understanding won’t want me conversing with a customer and suddenly behaving drunk from a shutdown.

That’s the thing, accessible jobs don’t exist for me people like me.

There’s no safely accessible and understanding job that will pay enough to live and thrive on (we deserve to thrive and have spending money just like everyone else) while only letting me work so many hours a month. Certainly not, where, multiple other people need to work and be paid for it, to make work accessible to me (who is realistically going to pay 5 people, to do one persons job?!) Certainly not that is wheelchair accessible, physical disability accessible and autism accessible. Certainly not that allows me to cancel at moments notice because I suddenly can’t speak or think or make basic connections like what my own name is. Certainly not that would allow me to have transition periods between, before and after each new job or demand. Especially not that would allow me more time out to recover. Especially not that would allow me to leave work early. Especially not when all that equals a job, where I have taken twice as much time doing a quarter of one of the jobs necessary for that working hour.

People say I could stack shelves and do basic work-they don’t see me in super markets or shops or shopping malls. There’s a reason I hate shopping. I get so overwhelmed that I can’t even exist in a shop or similar public location with lots of things and peoples and sensory issues, without near fainting and multiple seizures, where I suddenly become u able to talk in anything other than dribbles of syllables mashed together.

I wish I could work. But I can’t. I wish I could volunteer, but k can’t. It’s not a choice.

Likewise for so many disabled people like me-it’s not a choice. We shouldn’t have to push ourselves to breaking point, to the point of mental and physical and emotional decline to prove to people that we are worthy of eating and sleeping and water and shelter.

We must come together and push against this regime. We must campaign and write letters. We must participate in peaceful protests. We must raise awareness of the true horrors this proposal will bring for disabled and the long term sick, and we must never give up on fighting for our rights.

Ironically- yes - that’s a lot of work to do, and ironically yes, disabled and sick people like me are among the ones who probably are most vulnerable because we haven’t got the capability to work, to save our lives. We can’t safely campaign. Or advocate- so we need others to do it for us.

Please, please help us survive in anyway at you can. Please.

We cannot let our government harm and kill disabled and sick people. We mustn’t.

Upon the back-stabbing, new proposals, and being dangled into shark infested waters and forced to drown or swim, it makes me wonder, what if they’re right? What if I am a burden? I’d be lucky if my assessor read this, and yet they’d still conclude that I must be capable if I wrote this (I’ve been writing the majority of this blog for 2 years, but changed some of it in the last week, to be relevant to the new proposals. That change stopped me doing any other life skills or self care. To make those changes I have not showered or left my flat or done any chores or self care for a week…but hey, try convincing me I can work if I wanted to)

So yes. The proposal begs the question…

Am I a burden?

💫I can’t work or pay tax

💫Am I a burden?

I need 121 care to do basic life skills

💫Am I a burden?

I can’t drive

💫Am I a burden?

I’m emotionally unstable.

💫Am I a burden?

I can’t contribute to society in a ‘meaningful way’ (that makes them money)

💫Am I a burden?

I sometimes can’t feed, dress or clean myself due to autism shutdowns.

💫Am I a burden?

I cry and panic a lot

💫Am I a burden?

I can’t leave the house with out 121 care

💫Am I a burden?

I can’t afford my own food shopping or rent.

💫Am I a burden?

I don’t earn even close to enough to pay tax.

💫Am I a burden?

I need someone to help me so I can’t participate in my dreams, hobbies and advocacy.

💫Am I a burden?

I’m not ‘pretty’ - They can’t sexualise me, to make money - buy/sell things.

💫Am I a burden?

My own advocacy is only accessible to me when I’m made capable by my 121 support network.

💫Am I a burden?

I can do very few things alone.

💫Am I a burden?

On a average day, I have 11/100 life skills. On a good day 18/100 life skills. On a shutdown sick day? None.

💫Am I a burden?

I rely on benefits to survive, even though I’m married.

💫Am I a burden?

I sometimes can’t think, walk or talk and always struggle to move around freely.

💫Am I a burden?

I’m autistic.

💫Am I a burden?

I’m chronically ill.

💫Am I a burden?

I’m disabled.

💫Am I a burden? I cannot work

Am I a burden? No. No I am not; and neither are you.

Please, don’t believe your inner voice or the voice of capitalism. You’re worth so much even if the world doesn’t believe it. You don’t have to contribute to society in a ‘meaningful way’ to be worthy. You’re not a burden for existing-especially in a world that provides so little of the baseline of support necessary to empower you.

You’re worthy. You are valid. You are awesome. You are NOT a burden.

DWP stabbing us in the back and blaming us for bleeding, is not our faults or our failure…

So, Are we burdens?

No. The burden is society-never us.

Peace x


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