May I speak candidly?

Disability is my own personal hell.

It’s been a minute. And this isn’t my usual post. I’m not about to educate you, or inform. I am just going to speak candidly. I am in a fucking foul mood. I am in a foul mood, and I am tired, and I am in pain, and I am tired of being in pain. I am tired of battling my own body every single day to do anything. I am tired of every single part of being a human being, being agony for me. I have multiple complex pain disorders, one of them is the most painful condition medicine knows right now. I also have an allergy to opioids.

Standing, sitting, walking, sleeping, eating, breathing, it’s all agony. And there is no respite. Ever. Not for a moment. I cannot go anywhere without being a haze of pain induced vertigo by the time I get there. If I go via car it’s painful because there isn’t a road in this crumbling country that isn’t 95% potholes at this point, and every time you hit one the pain is excruciating. I can only describe it as like if you had a broken arm and I every so often punched you in it full force, and then squeezed it as tight as I can, and then poured a burning hot substance over the top. I go by train and there’s no guarantee of a seat, no guarantee of comfortable space, it is still not a smooth ride - every bump and bang and knock is pain after pain. And I get to pay the steepest public transport fares in the world for the privilege.

I am tired of having to fight to exist every day, expending more energy just to get through than you can even imagine. So exhausted and on edge that at any given moment I feel ready to scream and cry and scream some more, only to have to listen to deplorable, evil, power grabbing urchins like Keir Starmer and Rachel Reeves talk about how disabled people are lazy, how we are comfortable taking money from the government and need to go out and work, how they’re going to take the money that enables me to exist away and best of luck!

I am tired of having to be polite. I hate this country and its obsession with politeness. Everything can crumble around you, not one god damn industry is in any way functional, and engaging with education, or social housing, or healthcare, or public transport, or local government can actively make your life, health, wellbeing worse but god fucking forbid you get frustrated about that. God forbid you don’t keep your head down, and instead say you deserve better and now you’re the problem for making a scene. This country is going to politeness chokehold itself into oblivion.

I want Keir Starmer to suffer. I want Rachel Reeves to suffer. I want them both in agonising pain and when they ask for help I want them to be dehumanised, treated with suspicion as though they’re some sort of criminal or cheat. And then I want the help to be denied them. They don’t need it. Get up and work, even if it kills you. I want them to face exactly what they are wanting to inflict on millions of vulnerable people whose lives are so hard already. I want to live in a world where me saying I want them, my oppressors, to suffer is met with less shock, dismay and condescending tutting than them enforcing policies that will kill us is met with. As though my hypothetical wish for them to understand what they’re doing, is as bad or worse than what the violence they are ACTUALLY inflicting. I want to live in a world where I am not expected to keep calm and carry on in the face of inhumane injustice. I am tired of being made to feel like I am of no value because I cannot work. I am tired of hearing about disabled people getting in to work from these abhorrent politicians, who have absolutely no fucking clue what the lived reality is for disabled people.

I built The Black Project up myself. Every single part of it. Idea generation, content creation, social media management, branding, logo design, audience engagement, client satisfaction, audience analytics, brand relationships, marketing and communications, PR, building and maintaining professional relationships, research, journalism, reviewing, proof reading and editing, interviewing, transcribing, video editing, sourcing guests, diary management, administration, budget management, handling confidential and sensitive information, a whole food parcels scheme providing food for those in need around the country. I built it up with no training, no mentoring, no support, no funding, no guidance, nothing. Just me. I built it up so well I was asked personally to go and run the socials for The Black Fund for over 2 years. I built my theatre platform - Stalls to Stage - myself, and in less than 12 months it’s established its own presence entirely separate from The Black Project. I launched a podcast, and manage every single part of that from the shaping of the format, to the news research, to the booking of guests, to the organising of dates and times, to the booking of a space if necessary, the presenting, the interviewing, the recording, the editing, the posting and clipping and sharing, the promoting - all of it me. I launched my own theatre awards, and managed every single element of that event planning from inception to delivery and had it attended by some of the most respected professionals in the UK theatre industry. People who showed up for me because of who I am, and the reputation I have built for myself, and the relationships I have forged and maintained.

With so much love, I have more skills, more potential, and more promise than half of the people I have to engage with daily in conversations that make me want to bang my head against the wall as I ask them desperately to do their jobs. And I don’t make a penny for any of it. All those skills, all that achieved, a five year track record of doing the damn thing and doing it well. And I don’t so much as make it to a first interview when applying for work in social media management, marketing, communications, PR - and why? Because no one wants to hire the disabled person who needs multiple adjustments made to enable them to work, who doesn’t know what their body will do one hour to the next, who can’t work mornings because their pain is so extreme they haven’t slept well in 15 years, who can’t work full time or it would quite literally kill them. And even if they were willing to hire the least reliable person on the planet, I also don’t have a degree, or experience working in a team and so therefore all those skills I just listed? Useless apparently!

And whilst I would have loved to get a degree, the options for distance learning outside the Open University are little to none. I contacted at least a dozen universities off the back of covid to say “now you know you can provide distance learning, will that be an option for enabling disabled people to access higher education?” and every single one said no, there were no plans to do that. I had to pretend I wasn’t as disabled as I was to get a place at Roehampton, where they informed me all lectures would be available online for me to access. And when this wasn’t the case I was told “it’s not a guarantee, tutors just can do it if they so choose.” Meaning I could not complete the degree because I could not be on campus daily.

So tell me, where are the part time, fully remote, completely flexible hours jobs, that require no degree and come with employers that won’t fire me when my work isn’t done to a deadline because I couldn’t move for 2 days, or I couldn’t see straight, or my wrists were in so much pain I couldn’t type, or my neck pain was so high I couldn’t hold my own head up? Who won’t have an issue when I call in sick 2 hours after my start time because I worked for 3 hours the day before and it wiped all my energy reserves and I physically couldn’t function? Where the fuck are they @ Starmer’s Labour because you seem to think it’s us that are the problem, us that are lazy, us that don’t want to be anything but a burden. You talk big game but you have no god damn clue.

I am tired. I am in pain. I am tired of being in pain. And I am angry that what little energy I have left at the end of each day is being sucked up having to battle the mental consequences of existing in a country that’s leaders would sooner see me dead than invest in helping me LIVE. And all of that extra noise, extra struggle, extra suffering because they are too damn cowardly to tax the rich and redistribute the wealth that’s hoarded by the people that line their pockets in donations.

Disabled people deserve better. I deserve better. Not because you could be us at any moment. Not because your only options are to live long enough to become disabled, or to die young enough to never get there. But because we are people. We are here. We didn’t ask to be, we certainly didn’t ask to suffer each day, but we are and we do, and we deserve to live as best we can. And as this country loves to applaud when it’s Chris Mcausland or Rose Ayling Ellis on Strictly Come Dancing - we CAN be the best versions of ourselves, but ONLY when we are supported to do so.