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…
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.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, depression, meltdowns, mental health, ocd, tips, university Tagged: actuallyautistic, actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, asd, assessment, autism, autism spectrum disorder, autism support, autistic, autistic adult, autistic student, borderline personality disorder, bpd, coronavirus, covid-19, degree, depression, disability, disability stigma, disability support, disabled, disabled student, disabled student allowance, dsa, dsa assessment, gad, general anxiety disorder, invisible disability, invisible illness, lockdown 2020, masters degree, masters part time, mental health, mental illness, mental illness stigma, neurodiverse, neurodiversity, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, part time, part time masters student, part time student, personal independence payment, pip, sfe, stigma, student finance england, tips, uni, university, university support
Posted on May 9, 2020
When I’m not spiralling into an anxiety-induced meltdown over the pandemic, the resulting quarantine, and (particularly) the thought of a loved one getting sick, I can look at living in lockdown in a somewhat detached, practical sense (something that has taken over a month to be able to do). Intellectually speaking, we’re living in unprecedented times, experiencing something that our parents are experiencing with us for the first time – something that very rarely occurs. There are very few people alive who have witnessed the last pandemic of this scale: the Spanish Influenza in 1918. So this is a big deal, one that will be written about in history books and studied in the future – from political, sociological, and psychological points of view to name just a few. I’ve been thinking about that a lot recently and I can’t help thinking how often history is told from the point of view of the powerful and how terribly, appallingly wrong that is, especially given the number of mistakes being made by the people in power during this period (I’m speaking from the UK but I think we’re all aware of the mistakes being made by other governments, especially that of the US). So, if we want that to change, we have to write it ourselves, write our own experiences of living in lockdown, both for the history books but also for our own sake, so that we don’t forget what this experience has been like and how our lives have been changed by it. And as true as it is that we’re all in the same position – all in lockdown with limited access to our families and friends, the world outside, and our ‘normal lives’ – each of us will be experiencing this differently so I think the more experiences written about the better. So here I am, writing about mine, both for the reasons I’ve already listed but also to keep from drowning in it all, in the anxiety and the fear and the attempt to keep going as if this isn’t a traumatic experience.
I was aware of the Coronavirus before it even moved out of China but it felt like such a horror movie scenario and caused me such anxiety that I worked really hard not to think about it too much. It seemed unlikely that it would get all the way to the UK so I focussed on the anxieties in front of me and got on with my life. Besides, surely the government would be prepared should it reach us, given how much warning they had. I didn’t vote for this government nor do I trust them but I assumed that their egocentric motivations would have them preparing the country as best they could, for themselves if not for their people.
But then the virus started to move from country to country and more and more people in the UK began to take the idea that it might reach us seriously. I battled with my anxiety around it, trying to act responsibly without thinking so hard about it that it sent me into anxiety induced meltdowns. To an extent, I felt fairly unafraid of getting the virus as a young, physically healthy person but having said that, I was very aware that I was in regular contact with immunocompromised people and I was terrified of getting it and passing it on to them. So I was careful to wash my hands, use hand sanitiser, and avoid busy areas and travel times where possible. My anxiety had already been high before the virus made the news so it was a daily battle, as it often is.
Then everything seemed to happen at once. One day I was making plans with a friend for later in the week and the next she was on a plane back to her home country because of the travel ban. I didn’t even get to say a proper goodbye (that’s my little bit of self-pity done because I know, without a doubt, that she made the right choice and I absolutely support her decision). Before that week of classes began, our course came together (electronically) and decided that we didn’t feel it was safe for us or others if we were travelling to and from uni, etc, so suddenly my weekly routine was gone, my education disrupted, and my friends were all going home, again without any of us actually getting to say goodbye to each other. I know we can all talk via social media and video calls and that this isn’t forever but depending how long this goes on, we may never come together as a course again and that is an idea I find really difficult to get my head around emotionally.
I think it was the next week that we went into official lockdown. My university pulled out all the stops to support us and within days, our classes had been moved online but prerecorded lectures and a forum aren’t the easiest ways to have discussions and a sudden lack of access to the library and facilities wasn’t an easy adjustment. I found the online classes difficult. Don’t get me wrong – I really appreciate how hard they worked to keep our education up to date and as normal as possible – but it’s not the way I learn best. It’s just a personal thing. It also made working on the assessment essay much more challenging. Fortunately, I had a tutor who was incredibly supportive and with his help (and my Mum’s), I managed to get it in with good time, despite the added stress and the impact that had.
The essay, despite the anxiety it caused me, was actually a good distraction. As soon as it was done and submitted, I really started to feel the effects of being in lockdown. After all, up until then, I was pretty much doing what I would’ve been doing anyway: spending all my time on my assignment. But with that done, it all started to sink in.
The most obvious struggle is that I miss and worry about my family. I have four parents, only one of which I’m living with, and the others are all on their own; my brother is living by himself in London; my Mum’s Mum is also living by herself, a significant distance from any of us, even if we were allowed to visit each other (I’m thinking more in the case of an emergency where we would obviously keep our distance from each other and be very careful); and I have multiple family members categorised as vulnerable. So I have a lot of people to worry about and worry about them I do. The constant anxiety is exhausting. And as grateful as I am for video calls, it’s just not the same. I miss BEING with them. I desperately miss HUGGING them. I try not to dwell on it – or stress about how much longer we’ll be separated – because that is only more damaging to my mental health but it’s hard. It’s really hard.
On a similar note, I also really miss my friends. We have video calls, regular calls, texting, social media, movie dates on platforms like Netflix Party, and so on but again, it’s not the same. It’s not the same as hanging out with them, or hugging them, or going on coffee dates, or having writing sessions. As I’ve already said, I’m trying not to think about how long it could be before I see them again. We’ll manage, thanks to the technology we have, but it will be really wonderful to see them again.
The other thing that I’m really struggling with right now is my mental health. For those of you who know me or have followed this blog for a while, you’ll know that, amongst other things, I struggle daily with anxiety and depression. These are the particular problems that have only gotten worse since the appearance of Covid-19 and the lockdown.
I’ve still been having therapy, but via Zoom instead of in person. In theory, it shouldn’t be that different but somehow it is. I’d never really considered how important it is to have a space to work through all the hard stuff and then be able to walk away from it, which you just can’t do when you’re having therapy in your living room. Plus, Zoom calls are exhausting – here’s a good article about that – which only adds to how exhausting therapy can be. Then, when it comes to the content of a session, it all feels a bit frozen: it’s hard to tackle difficult emotions when we’re in the middle of different difficult emotions. And when I’m just about coping, feeling so fragile, I don’t want to trigger something and make life even more emotionally difficult for myself than it is already. So the whole thing is really tricky and confusing. Having sessions is definitely better than not having them but it’s not straightforward. It’s not as easy as I thought it would be when we made the plan just before lockdown.
And just to add to that, I’ve been struggling with sleepiness as a side effect of my medication for months but that’s gotten a lot worse since self isolating (perhaps from the increased anxiety – I don’t know). I’m exhausted by the smallest things and I seem to need so much more sleep. And that hasn’t been helped by a sudden, intense bout of hay fever, which has bestowed upon me the additional symptoms of an itchy, blocked nose and sore, itchy eyes. It’s been so bad that even having the windows open makes it dramatically worse so going outside definitely hasn’t been an option (I can’t take antihistamines because of my other medication). So I can’t even go in the garden, making me feel all the more trapped. Inhaling steam helps but only for short periods of time. The recent rain has been a blessing, giving me several days of relief. I’m cautiously hopeful that it’s started to settle – I’ve managed a couple of trips into the garden without incident – but I don’t want to speak too soon.
And lastly, for now at least, I’m really struggling with how uncertain everything is, uncertainty having always been something that causes me anxiety. We don’t know when the lockdown will end, we don’t know when we’ll be safe again, we don’t know when we’re going to see our friends and family again. I don’t know what’s going to happen in terms of my university course. And so on and so on and so on. So on top of the ongoing fear, there’s nothing solid to hold onto. Many of my summer plans have become impossible or at least difficult, while some have been cancelled outright, which has obviously been very upsetting and left me without anything to look forward to or anchor me. I feel very lost. I’m sure that’s true for a lot of people at the moment. I try to focus on each day as it comes but it’s hard. We’re all so used to looking and planning ahead.
One more thing… I found this on Twitter the other day and wanted to share it:
Let me be clear (a thread):
Those "all over the place" feelings you've been having? They are symptoms of stress, NOT personal failures of yours.
Do you feel FLAKEY + INCONSISTENT? That's b/c your brain doesn't know what news to brace for next, or what next month will hold.
— Alexis Rockley (@alexisrockley) April 14, 2020
Feeling CREATIVELY BLOCKED? That's because your brain has temporarily diverted all its creativity (aka ability to solve novel problems) to "how do I avoid dying?" while in a narrowed, slow burn, fight-or-flight state.
— Alexis Rockley (@alexisrockley) April 14, 2020
Your plans, creativity, energy, focus + motivation are on a YO-YO right now, b/c your brain believes you need to be EXTREMELY ADAPTIVE.
You will not be on this rollercoaster forever. Be patient with your brain.
a positive psychology-certified coach + fellow human
— Alexis Rockley (@alexisrockley) April 14, 2020
I found it really helpful to have various explanations as to why I’m struggling, to know that my brain isn’t actually broken. Of course, knowing this stuff doesn’t actually fix the problems but being able to take a breath and reassure myself that there is a reason and that it won’t last forever has been helpful.
I hope you’re all safe and coping the best you can. And if you’re in the UK and they do loosen the lockdown this coming week, please continue to be careful. I hate being in lockdown but I’m absolutely terrified of what will happen if the government relax the rules, of how many more people will get sick and die. I’m scared out of my mind that someone I love will catch it. I can only speak for myself but I’m sure I’m not the only one with such fears. So please, please be careful. For all of us.
Category: covid-19 pandemic, death, medication, meltdowns, mental health, music, sleep, therapy, university Tagged: anxiety, assessment, collaboration, concentration, coronavirus, covid-19, cowriting, depression, drowsiness, emotions, essay, exhaustion, family, fatigue, focus, friends, hay fever, history, lockdown, masters degree, masters degree in songwriting, mental illness, netflix, netflix party, online classes, pandemic, planning, plans, quarantine, self isolating, sleepiness, social history, songwriting, summer, technology, travel ban, trigger, twitter, uncertainty, video calls, writers block, writing session, zoom, zoom calls
Posted on April 25, 2020
So, that’s it. I’ve finished the second semester of my Masters Degree. That’s a very weird thought. I kind of can’t believe I made it. But I did. And I wanted to write about it, like I wrote about the first semester because all of this is weird and wonderful and difficult and part of the journey.
This semester, the module I studied was called Musicology (“the scholarly analysis and research-based study of music”) and my classes were split into two different blocks. The first was a series of lectures, each based around a different artist/songwriter and a specific element of their career, like David Bowie and identity, Prince and authenticity, and Max Martin and his use of melodic math (not all of them were men – these are just the ones that are coming to mind as I write this). I’d expected it to be based more around elements affecting music and it’s creation and consumption, like the history of certain genres, feminism, the constant evolution of technology and social media, rather than specific artists but maybe that was a misinterpretation on my part or simply a different approach that could’ve been taken. I don’t know. It was interesting and I learned a lot but a lot of the reading was very academic which I struggled with, given that I’m having some trouble with what you’d probably call my cognitive processing. Having said that, we had a great tutor who is really passionate about the module, which made it so much more enjoyable and engaging than a lecture heavy module could’ve been.
The group was larger than I was used to but there were a lot of familiar faces, including my two closest friends on the course. That was definitely a positive, both because I love them and because it helped me to adjust to all the changes. But it was also nice to meet some new people and get to know better the ones that I sort of knew and wanted to know better. So that was really nice, even if it took me a while to adjust to the new group dynamic. I’ve made some good friends from that class, even though it was cut short by the lockdown (I’ll get onto that in a bit).
The second block of classes were practical classes where we discussed in further depth the techniques we’d covered in the lecture class (the technical skills and application) and then we’d go away and write a song based on those techniques. Some of the briefs were really inspiring but on the whole, I found the whole exercise frustrating and a bit of a waste of time. We’d just spent a whole semester working on our creative process and tackling our blocks and weak areas and suddenly we had no time to work on them any further because we were focussing on and trying out other people’s techniques. I just feel like I was finally making progress, particularly in my musical ability (I’ve always struggled when it comes to experimenting with different chords and chord progressions), and suddenly that progress was being curbed dramatically, making it really hard to invest myself in the songs I was writing for this class.
The assessment for this module was a single four thousand word essay on anything related to songwriting. Most people choose a songwriter and then focussed on some aspect of their songwriting or the impact of their songwriting in a certain area, like feminism or the genre they were part of, for example. I really didn’t want to go through the overwhelming stress I went through at the end of the last semester due to lack of clarity around the assignments so I spoke to my Module Leader (who was also my tutor and a tutor I’ve known since my BA) really early in the semester so that I could be as prepared as possible and when I presented the potential subjects I had in mind, he gave me some really good advice: choose the one you’ll learn most from. So I decided to investigate Taylor Swift’s use of imagery and how that links to the authenticity in her songwriting, specifically in her song, ‘All Too Well.’ I thought that would benefit my songwriting the most, since those are elements that are important in my writing and therefore knowing more about them could only strengthen my use of them. So, alongside my classes, I slowly started to gather research about those topics.
I was still researching (I readily admit with the help of my Mum because I found myself struggling so much with the academic language and with my cognitive functioning) when the Coronavirus reached the UK. Classes continued but as a course (there aren’t a huge number of us and we have a group chat on WhatsApp where we’re in constant contact with each other) we discussed the situation and came to the collective conclusion that we didn’t feel safe travelling to and from uni, as well as being in the busy setting of a university. Our representatives contacted the senior staff and not long after, our classes were moved online. I think it was a week or so after that that the lockdown was announced.
Initially, not much changed for me, apart from the fact that I was no longer commuting to London for my classes. I attended the online classes, did my work, and researched for my essay. Determined not to go through a last week of panic writing, I got to writing as soon as I had enough material and added as I learned more. My tutor was fantastic in recommending sources when I got really stuck (there’s not as much research on imagery and authenticity in song lyrics as you’d think) and giving me some excellent feedback when I finished my first draft, still with plenty of time before the deadline. He’s been amazing throughout the whole module and I’m really grateful. I, again with my Mum’s help, went through the feedback and did the best we could to improve and strengthen the essay before submitting it just under a week before the deadline. So no last minute panicking. I think I did the best I could under the circumstances. But it wasn’t a solo effort. They’re my ideas and my words but I would NOT have been able to do it without my Mum’s support, and gentle pushing on the days where it just felt too hard. I couldn’t have gotten through the researching, the writing, or the editing without her. It is a better piece of work because of her help and I’m so incredibly grateful, both for her help on this assignment and throughout this module but also for her in general, for the ways she has supported me otherwise: helped me manage and protect my mental health, organised my life for me when it took all I had just to stumble through the days, for making sure I ate, even and probably especially on days when I didn’t want to. I’m so lucky to have her and I’m aware of that every minute of every day.
It’s been a weird semester. In a lot of ways it was smoother than the first, both because I was getting the hang of my routine as a Masters student but also because my mental health was more stable, if not necessarily better. I had some great, cherished times with my friends but then they were all suddenly ripped away without proper goodbyes by the lockdown (thank god for video calls). I got to do some really fun cowrites, which were then suddenly stalled for the same reason. They can be rearranged and done by FaceTime or Zoom but it’s not the same: I find it much harder to be creative WITH someone when we’re not actually in the same room (plus the lag time makes singing or playing together a real challenge). I’ll make it work because I love cowriting and I love the people I’m writing with but I do find it harder. I was also really enjoying the lectures and discussions we had in class and online classes just aren’t the same. So what was mostly a pretty positive semester was cut off in its prime and I do grieve the way things could’ve been.
I’m done now. The full-timers have another semester but I’m free until the end of September ish. I’ve completed the first year of my Masters Degree. That’s a very strange sentence to write out. There were many, many moments where I was sure I’d have to defer, despite the fact that the thought made me feel physically ill. But I made it. It was somewhat anti-climactic, given that we’re all in lockdown: I uploaded my assignment, clicked a button, and that was it. Year One done. I don’t think I could sum it – or the emotions I’ve experienced – up if I tried, not without writing a PhD length post. It’s been good and difficult and inspiring and more stressful than I could’ve possibly imagined. I’ve learned a lot and I’ve met some wonderful people. I guess I’ll leave it at that.
Category: anxiety, autism, covid-19 pandemic, emotions, mental health, music, university, writing Tagged: academia, all too well, artist, assessment, authenticity, cognitive processing, commuting, concentration, coronavirus, covid-19, cowriting, creative process, essay, essay writing, facetime, feedback, focus, friends, imagery, lectures, lockdown, lyric writing, lyrics, masters degree, masters degree in songwriting, masters degree year one, masters part time, motivation, musical skills, musicology, online classes, online learning, part time masters student, quarantine, research, songwriter, songwriting, songwriting briefs, songwriting techniques, support, support system, taylor swift, video calling, zoom
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 (and currently studying for a Masters in songwriting) 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.
I’m currently releasing my first EP, Honest, track by track and the first three songs are available on all major platforms.