My DSA Assessment

So, for those of you who don’t know, DSA stands for Disabled Student Allowance, something you can apply for as a disabled student to help you get support during your university experience. They can help you with technical support, in uni support like 1-to-1 sessions, and so on. You apply for an assessment and then, if you get one, you talk with the assessor about the support you need, discuss what DSA can provide you with, and then they make a recommendation.

I had an assessment during my undergrad degree and they were really good. They provided me with a load of useful tech, including a macbook, a handheld recorder, and several pieces of software to make doing my work easier. I was (and still am) really grateful, even though the laptop’s memory isn’t actually big enough to run all of the software. It was still a laptop and a much lighter one than the one I had, which made commuting a lot easier – I was coming home with bruises from the bag I was carrying because it was so heavy.

The at uni support was less helpful. The first person I saw acted like a therapist (which I’m not sure she was supposed to be doing) and I already had a therapist so that wasn’t helpful. I spent the hour answering questions about my mental health and my Autism that I’ve answered a hundred times before. So I didn’t continue with that. And the second person upset me so much that I left before the session finished.

So it was a mixed experience but I’m endlessly grateful for the laptop because the old one was causing me serious problems.

I had to redo the application process for my Masters as what they offer is different and today I finally had my assessment – between the disability coordinator being very unhelpful (an understatement) and the semester being incredibly stressful, we’d just kept postponing it. It was too much to manage. But recently we finally managed it and it was a complete nightmare.

The guy was nice and we discussed everything – the problems with the disability coordinator, my first semester, my general experience of life, what would make university easier – but when it came to talking about what support was possible, it was very disappointing and upsetting.

Technology wise:

  • They will offer me a Windows laptop (which I would have to part pay for) but I can only run the software I need on an Apple computer.
  • They will not offer me a (lighter) Apple computer.

This is despite the fact that I need a light laptop, due to the chronic fatigue and pain I struggle with and an Apple one to run the software I need for the course. But apparently this is because these are ‘course specific’ needs rather than disability needs, yet I – a disabled student – can’t do my course without them.

Travel wise:

  • They will not cover or contribute to the train tickets to London.
  • They will cover cabs to the station.

This is because, apparently, I choose to live at home rather than living in London like most students studying in London despite the fact that I am unable to live alone and look after myself because of my disabilities. Apparently, this would give me an advantage above other students, which is bullshit because in reality, it would simply put me on a level playing field because I am disadvantaged by my disability. And the amount of effort that would go in to justifying each cab trip to Student Finance when Mum usually takes me (because they won’t simply give you an allowance for it) would take more effort and energy than I have to spare on something used so rarely.

And uni support wise:

  • They have no direct contact with the universities and so cannot offer any support through them.

So I will continue to have no specialist support at uni.

There was a moment during the discussion that I just realised that they weren’t going to help me and that I was going to be left unsupported, abandoned, again. And I just started crying. They’re not going to provide me with any support because my needs don’t fit their guidelines, because my disability doesn’t fit with their idea of disability. The assessor said it happens to a lot of people like me. I’m not sure why he told me this. Is it supposed to make me feel better? Because it doesn’t. 

We’d run out of things to discuss so the assessor left the room to give us a few minutes to talk and I just started sobbing. I just feel so unsupported. I feel so let down. These are people who are supposed to help me. Their very job is to help me and they are… letting me down. There was nothing to talk about and I was moments away from a meltdown so Mum packed me up and we headed for the door.

I was passing through the door when I saw this:

Scan 5

What a joke. What a fucking joke. I’d walked in there calm and was walking out feeling… I don’t even know how to explain it. Just devastated all over again, I guess. I’m so tired. I’m so tired of working so hard to prove to everyone that I need help only to be ignored time and time again. I’m tired of being dismissed and invalidated because I don’t fit someone else’s arbitrary concept of something they have no real idea of but that I live with and suffer with every day. I’m tired of nobody thinking that researching or training in the understanding of Autism is important. I’m so tired. Of all of this.

Mum pointed out to the assessor how ironic the flyer was. I think offensive or appalling are more appropriate given the previous hour and a half but whatever. I cried all the way home and for a long time afterwards. I don’t know what to do now.

Obviously this is just one person’s experience. I’m not sharing this because I want people to avoid applying for DSA. It helped me during my BA. But I just don’t want anyone going into it without knowing how hard, how upsetting, how traumatic it can be. Getting benefits of any kind can be a real struggle and this one is certainly no different.

Grateful 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.