Finding Hope#WelfareNotWarfare
Posted on June 30, 2025
During the last several elections, I’ve felt frustration that I couldn’t vote Labour and help to oust the Conservatives who’d been in power since before I could vote. Don’t get me wrong, I am proud to vote for The Green Party but there was a level of frustration in that I had to vote Green in order to avoid splitting the vote between Green and Labour and letting the Conservatives get in. Voting Green keeps The Green Party in, which I do absolutely want, but it was hard knowing that it never swayed the overall outcome and that was quite distressing. Having said that, in this recent election, never have I been so glad to have voted Green and not Labour…
Today is the final day of the government’s Pathways To Work consultation – nicknamed “consult-a-sham” – on the disability cuts bill and as much work has been done and pressure applied by disabled people’s grassroots groups and charities, as much as people have protested (in the streets and online), and as many emails have been sent to MPs, I’m still so scared that this bill will go through because I don’t think the government is listening; I don’t think many MPs care (again, I’m so fucking grateful that my MP is Sian Berry who does very much care). They don’t seem to care about any of the evidence and no argument will convince them that this bill will not get disabled people working and that it will, in fact, be completely devastating: disabled people will be pushed into poverty, their health will deteriorate, lives will be lost (and taken out of desperation). And yet so many among the government are focussed on the non-existant savings instead. You know how they could save money? By taxing the rich. And you know what? There are millionaires and billionaires ASKING the government to tax them over disabled people.
I am utterly terrified of what the upcoming cuts will mean, for the disabled community, for my disabled friends, and for myself. Many of us rely on these benefits to manage our conditions on a daily basis, whether working or not, because being disabled is inherently expensive. We will be losing thousands of pounds a year that we depend on for survival, forget living or thriving. Taking these funds away will be devastating and, as I said, will cost people their lives.
I struggle daily with multiple physical disabilities, multiple chronic illnesses, multiple neurodivergent conditions, and multiple mental health problems. I have spent the last three plus years struggling to survive, struggling to stay alive because I was and often am so depressed. I struggle everyday with the trauma of living like this, of living like this in a society that sees me as a burden. My needs are complex but there are individuals with far more complex needs than mine. Without adequate support, even day to day living can be impossible. I’ve never been able to work, having first gotten sick at twelve years old, but that does not mean that I haven’t relentlessly tried my best to become stronger, physically and mentally, to contribute wherever I can. Without PIP, none of my achievements would’ve been possible. Without PIP, that is all over. The support I’ve had to find and fund myself – through PIP – after being repeatedly let down by the NHS will be gone and, without it, I don’t know what will happen. I truly don’t know how I will survive.
These cuts are not in line with the core values of The Labour Party, the party this country voted in, the party that established the welfare state. If they really stood by these values, they would be trying to improve the lives of disabled people rather than following in the footsteps of the Conservatives, cutting benefits and support, and then taking it further than even the Conservatives were willing to go: they felt that £3 billion in cuts would make them look bad. Apparently Labour weren’t worried about this, almost doubling that figure. Those in support of this bill should be ashamed of themselves. They wouldn’t last a week on PIP. How dare they rip away our lifeline and then have the audacity to claim that they’re helping us. The cuts that Starmer is pushing for, while deliberately ignoring the obvious benefits of a wealth tax, has been declared a violation of our human rights by the UN. A. violation. of. human. rights. Let that sink in.
I don’t know how it can be legal to use to a manifesto supporting the disabled community, if only vaguely – their own concrete commitment was to “consult and coproduce disability policy with disabled people’s organisations” – to get voted in, only to do the complete opposite and put thousands and thousands of lives in jeopardy. How is this democracy? How can democracy ever be upheld when political parties can say whatever they want to get elected, only to do whatever they want, regardless of the promises they’ve made. Where are the consequences when they are the ones in power?
Labour have added concessions to the bill but I doubt they’ve been received as the government would’ve hoped; they most likely hoped that it would appease those protesting but many see it as a win, as a sign that putting pressure on the government is working and that we must continue to do so. There was an incredible protest in London today, for example, and although I was advised not to go on medical grounds, I did attend online and it was very inspiring. This community is amazing and I’m so proud to be a part of it, even if it is a community that none of chose to join.
The only way that I think the DWP can ever be truly effective is if it is run by disabled people, by those who truly understand what it is like – what support a person might need and how expensive it is – to be disabled. Labour’s promise of coproduction has been completely forgotten about but the system was far from perfect – a true understatement – before they came to power. Steve Topple wrote an excellent article about all of this for The Canary: it’s well worth a read. As he says, “If this bill passes, it will be in defiance of disabled people, not in partnership with them. That is the DWP’s legacy.”
I don’t know what’s going to happen, how the vote will go. I want to believe that there has been enough protest, enough letters, enough tragedy already to prove that it is a catastrophic, callous move but I still can’t help but fear that it will pass because not enough MPs care about disabled people. I am so grateful for the ones that have spoken up – like my MP, Sian Berry – but I worry that it won’t be enough, especially considering how many Labour MPs who once upon a time stood for improving the quality of living for disabled people have since changed their views, no doubt pandering to the right wing; seeing videos and quotes of their previous comments compared to their current ones makes me feel physically nauseous.
But with only hours left, I have to have hope because there’s nothing else to be done. On a personal level, I’ve gone to every protest I can manage, written letter after letter after letter, and signed every petition I could find. I’ve spent more time on social media than was probably good for my mental health. I hope that it’s been enough but either way, it was worth it. If I did everything I could do, then it wasn’t time wasted, regardless of the outcome. I just hope the outcome is the one that we want it to be.
The DSA Process For My Masters Degree
Posted on September 12, 2020
Since the academic year is starting up again, I thought I’d write about my experience with getting support for my Masters Degree as a disabled student. The DSA (Disabled Student Allowance) process can be very difficult so, having been through it twice now, I thought I’d share my experience. I don’t know if I’ve had a good, bad, or typical experience but I thought that simply putting the experience out there might be helpful to anyone at the beginning of this process, to give them an idea of what may happen down the line. As I’ve already said, it’s difficult and tiring but that’s not to say that I would discourage someone from applying. I was just very naive going into it the first time and was blindsided by how complicated and stressful it was; I’m lucky to have had help going through this both times. Having support from sources such as DSA can be hugely beneficial but I wouldn’t want anyone going into the application process unaware so I thought I’d share my experience as I haven’t seen many accounts of the whole process…
I wrote about my first assessment in great detail here, so I suggest reading that but I’ll also sum it up here to make sure I’m sharing the full experience in one place. So… That first assessment was a complete disaster. The assessor was perfectly nice but when we got to discussing what support DSA was willing to offer me, it went downhill fast. They would offer me a laptop, but not one with an operating system required to run the programs I needed for my course because apparently that was a course specific need rather than a disability specific need despite the fact that I – a disabled student – needed them to do my course. They wouldn’t offer me any travel support towards commuting because I’d ‘chosen’ to live at home when I actually had to live at home because of my disabilities. And they have no direct contact with the universities themselves so they couldn’t offer any support through them. So, essentially, they weren’t going to offer me anything because my needs didn’t fit their guidelines, because my disability didn’t fit with their idea of disability. It was hugely frustrating and distressing and I left in tears. I felt completely let down and abandoned.
By the end of the assessment, I was so utterly distressed that the assessor told us that we could appeal, which we did. The second assessment was with a different person, a really lovely woman called Rebecca, and was much longer and in much more depth. We went through everything again in minute detail: from the necessary computer specifications to the exact details of an average university day’s travel. She went through all the possibilities and all the potential outcomes, as well as the potential roadblocks and the reasonings behind them. It was a lot of information but I did leave feeling more hopeful; I really felt like she was on the case, like she was really committed to helping me get as much support as possible. Her report went through several different people before reaching a senior SFE (Student Finance England). It was initially rejected but then, when we provided them with documentation proving I receive PIP (Personal Independence Payment), they changed their minds and granted me a new laptop, software and apps to help with my lectures, independent study, and mental health, and mentoring through the National Autistic Society (although it seems that, due to the pandemic, this service no longer exists). I didn’t get any support for the travel but I’m grateful for what I did get, plus the travel costs haven’t exactly been an issue over the last few months… From that second assessment, it was four months before I received the support I was awarded.
In my experience, the whole DSA process is very slow. It was slow when I went through it during my Bachelor’s Degree and it’s been even slower this time, presumably due to the pandemic. I started this process in January – much later than intended but my mental health was so bad that I couldn’t handle the in person assessment – and didn’t get the equipment until June. Then the laptop that arrived wasn’t the right one and so we had to spend another two weeks – and a somewhat ridiculous amount of emails proving that it was in fact the wrong one – organising the swap, insuring that I got the one that my DSA assessment had determined I needed. A couple of weeks later, the new laptop arrived but setting it up took much longer than it should have. This was due to how the people who’d previously worked on my laptop had set it up, making the transfer of all my files much more complicated and messy. It’s still not as sorted as I would like it to be but it is functional.
Factoring in all of this, had I been doing my Masters in one year rather than two, I would’ve had this equipment for less than a semester before I finished the course. Yes, this was affected by the pandemic, problems with the university Autism support person, and the late start in pursuing DSA but that was due to the reasons I was in need of support so it’s not the most efficient system in that regard: what happens if you’re too disabled by your disability to seek help?
The laptop and software that DSA have provided me with has been invaluable, especially since my laptop was dying a slow death around the time I received the new one. We didn’t get everything we were hoping for but it’s definitely better to have it than to not. So, having now been through this twice, I thought I’d offer some tips that would’ve been helpful to me before going through the process…
- If you disagree with part or all of the final assessment, ask to talk to someone else – It’s not something you’re necessarily made aware of when you have the assessment but I was so distressed by the end of the assessment that the assessor told us we could appeal. My second assessment yielded quite different results than the first one so it’s definitely worth asking if you feel that you haven’t been heard or fully supported.
- Ask what kind of documents act as proof of a need for support – The earlier you find out what paperwork might help your case, the quicker the process will go. We, unfortunately, didn’t know that the PIP documentation was helpful and the whole thing may not have taken so long if we had.
- Take someone with you as it can be overwhelming and tiring – These assessments can go on for hours and there’s a lot of information to both give and receive. Plus, it can be a pretty emotional experience so having someone with you can make the whole thing easier; you have someone to lean on and two pairs of ears to take everything in.
- Ask for everything that you would find helpful – You might not get it all but you definitely won’t get it if you don’t ask and hopefully you’ll get some of it. It’s also always worth asking what you’re potentially entitled to because there may be things you aren’t aware of that could be helpful.
- If you’re told something isn’t possible, ask why – The assessors can’t know every relevant question to ask and you can’t know every relevant piece of information to give so if they tell you something isn’t possible or available, it’s worth asking why because you may have some information or some paperwork that changes the situation and what support you can get.
I hope this post is helpful for anyone considering or going through the process. I hope I haven’t made it sound too scary. I really do recommend it but I wouldn’t want anyone to be unaware of how difficult and stressful it can be. You deserve to get the support you need and I only want to make that easier, if only by arming you with information and advice. So, if you’re going through it, I wish you the best of luck and I’m rooting for you.
Grateful 2019
Posted on December 24, 2019
This year has been a weird year, something I don’t really want to get into until I do my end of year review. But it has been a weird year and with all the medication changes and mental health issues, it’s only the last three months that are really clear in my memory. I’m very aware of being grateful – there’s so much to be grateful for – but having had such a fuzzy brain, I feel sure that I’m forgetting things, something that’s causing me a lot of anxiety. Pieces of the year are just missing from my memory, whether blurry or plain misfiled, and so I worry that there are moments in there that I should and would be grateful for if only I could get a grasp on them. But I can’t. So this is the best I can do. Please forgive me if I’m leaving things out.
My Mum – I always list (or shout out) my Mum because she is the person that I am most, most grateful for. Being the person I am with the disabilities I have, I couldn’t survive in any way without her and for that, for her presence, I am so grateful. She goes above and beyond to help me through the bad days and achieve on the good days and I’m just in awe of her. She is the most caring person I know.
Richard (my best friend and writing partner) – During the first part of the year, Richard and I planned an EP that we were both so, so excited about. And then suddenly, overnight it felt like, that excitement disappeared for me. It was replaced by paralysing anxiety, so bad that I couldn’t even talk about the project. It was awful. But we got through it and the EP – Honest – is now slowly being released, all of which is largely because of Richard, both practically and emotionally. And that’s just our working relationship. He’s always there to text me shitty jokes, to help me write songs when I’m banging my head against the wall, to eat sweets and watch The Good Place with. I don’t know what I’d do without him.
My Family and Friends – I often give a specific shout out to Mum and Richard because they seem to be the ones who most commonly see and help me with my bad days and my anxieties but the rest of my family have also been amazing this year. They’ve always been there when I’ve needed them. I haven’t seen many of my friends as much as I would’ve liked to this year. Between the depression, the trying of different drugs, and starting the Masters, it’s been a messy and complicated year that I will write about more in my end of year review. Hopefully I’ll get to see them more next year.
The animals in my life – We started the year with our dog, Lucky, and three cats, Lucy and her kittens, Mouse and Tiger. We’d dabbled with the idea of Mouse having kittens, just to do the kittens experience one more time, but just as I changed my mind – it was too much change and I needed everything to stay the same – we came home and Mouse was having kittens, despite the vet telling us the week before that she wasn’t pregnant. And now we have two kittens in the house, two black furballs called Sooty and Sweep. They’re gorgeous and them, plus the rest of the animals, have really helped me with my anxiety (which has been overwhelming) over the last three months and that has been so, so important.
My Masters Degree group – Starting a new course or a new anything is always scary and for me, the scariest part tends to be the new people. Fortunately, I’m doing my Masters course at the same uni I did my BA so that was really the only new thing. But I got really lucky: I ended up in a really small group and they’re all really lovely people. It feels like we’ve gotten to know each other pretty well and we’re all so supportive of each other. The groups are going to change somewhat after Christmas but it became a really safe environment, creatively and personally, and I’ll really miss it. I know I’ll still see them and our friendships won’t suddenly end but I’ll miss our little pocket in space and time.
My benefits being renewed – Given how scary the political climate in the UK has become and continues to become, I am so, so grateful that my benefits were renewed before the election and will last until just before the next election, regardless of what happens in the next few years. That was such a relief to learn. I don’t know what will happen after that but for now, I feel like I can breathe a little bit easier.
Red Bull – The major side effect of my current medication is this overwhelming sleepiness. When I told my psychiatrist about it, he said that it should wear off but that it could take months. I’d been drinking Red Bull to help me stay awake and help me concentrate; we discussed the fact that it’s not massively healthy but it’s his opinion that the sleepiness will wear off, hopefully within a few months and then I can give up my Red Bull habit. So we’re keeping an eye on it and in the meantime, Red Bull is my best friend.
Fanfiction – In times of great anxiety, I’ve reverted to a major hobby of my early teenage years. I read stories from every film and TV show I loved and wrote reams of the stuff. I’m not writing it this time around but reading it and getting lost in new stories from familiar worlds has been a very effective calming strategy. It’s made me feel safe. And it’s kept my creativity (always stifled by my anxiety) burning low, in the background, for when I’m ready for it.
His Dark Materials – I have been in love with this show from the first episode. I honestly can’t remember the last time I was so impressed by and excited about a TV show currently airing (I’ve fallen in love with shows after they’ve ended, for example). Daphne Keen is an incredible Lyra and Ruth Wilson blows me away every episode as Mrs Coulter. The sets, the CGI, the characters’ relationships with their daemons, the complexity of the characters, even the introduction sequence are absolutely extraordinary. I’m so gutted that the series is over but I can’t wait for the next one.
Taylor Swift – I’m pretty sure I’ve always mentioned Taylor Swift but I probably always will. Her songwriting is incredible, she’s one of the hardest working people in the music industry, she’s generous, she’s intelligent, and she’s exceptionally kind. She’s one of my favourite singersongwriters and her recent album, Lover, is so, so good: one of my favourite albums of the year, possibly one of my favourite albums ever. It’s beautiful and vulnerable and special. She’s also been saying some very smart and very important things during her recent press cycle:
- “I’m a woman, I’m not a coat hanger. I need to feel healthy in my life and I need to take pleasure in food and I need to not use my body as an exercise of control when I feel out of control in my life.”
- “Do not let anything stop you from making art. Just makes things. Do not get so caught up in this that it stops you from making art or if you need to, make art about this. But never stop making things.”
- “You’re not always going to be inspired and that’s okay.”
- “If someone’s gonna take your hand, they’d better take your hand, scars and all.”
- “I guess what I’m trying to say is that all any of the artists, or really anyone in this room wants, is to create something that will last, whatever it is in life. And the fact that this is an award that celebrates a decade of hard work, of art, and of fun and memories, all that matters to me is the memories that I had with you, the fans, over the years. We’ve had fun, incredible, exhilarating, extraordinary times together, and may it continue! Thank you for being the reason why I am on this stage, from the first day of my career until tonight.”
- “I think that artists deserve to own their work. I just feel very passionately about that.”
And lastly, she’s fearlessly standing up for artists and their right to own their music. It’s a big, hard fight but she’s using her platform and her power in the industry (“as your resident loud person”) to try and change that. Of course, she’s personally affected by it but she could handle it in private. Except she’s not: she’s speaking out and working to create change. And as a new artist, I really appreciate that she’s trying to make the industry I’m entering fairer and less discriminatory.
I think I’ll stop there. I’ve got my Christmas wrapping to do and a Christmas tree to guard from some very inquisitive cats. I hope you all have a safe, happy, and healthy Christmas where you feel as special and beautiful as you are.
EDIT: Honourable mentions to Nashville and the lovely people there, Agents of Shield, and fairy lights. But if I keep going here, we’ll be here until 2020.
Finding Hope 