Posted on February 15, 2020
January was tough. A lot of difficult things happened. Normally, I wouldn’t do a monthly round up but there were several things this month that I didn’t think would get properly acknowledged (in my yearly review or otherwise) if I didn’t. So here’s January 2020 and it’s highs and lows…
(Luce Barka performing ‘Be More Kind’ – a very beautiful, meaningful song.)
“I’m so, so excited to announce that the music video for ‘Clarity’ will be coming out Friday 7th February! @rsandersonphoto and I had such so much fun shooting this and there’s a pretty cool surprise in there so we hope you love it as much as we do!” (x)
So that was January. Yeah, 2020 – the new decade – began on a very stressful and sad note. I’m thankful for the moments of light.
Category: animals, anxiety, autism, death, emotions, event, favourites, food, meltdowns, mental health, music, university, writing Tagged: 30 day challenge, 30dayfeb, asd, assessment, assessments, autism, autism spectrum disorder, baby loss, baby loss awareness, bad night, bbc introducing, bbc introducing south, befries, bereavement, cheer, clarity, clarity music video, disabled student allowance, dog, dsa, dsa assessment, election, england, exams, favourite music, friend, friends, gig, grammys, grammys 2020, halsey, honest, honest ep, loss, lover, luce barka, luce barka music, manic, masters, masters degree, masters degree in songwriting, meltdown, meltdowns, mindfulness, music, my music, natalie hemby, netflix, origami, pet, presentation, radio, richard marc, richard marc music, sara bareilles, she used to be mine, show, songwriting, spotify, stress, taylor swift, tommy's, track of the day, uk, university, waitress the musical, wellbeing
Posted on January 11, 2020
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.
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.
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:
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:
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.
Category: anxiety, autism, depression, event, meltdowns, mental health, university Tagged: asd, autism, autism spectrum disorder, benefits, chronic fatigue, chronic fatigue syndrome, disability support, disabled, disabled student, disabled student allowance, dsa, dsa assessment, masters, masters degree, student, university, university support
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
My second single, ‘Bad Night,’ is also now available on all platforms and is the first track from my new EP, ‘Honest.’