Finding HopeThe 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.
I Finally Left My House
Posted on July 18, 2020
On Monday, for the first time in over a hundred days, I left my house.
I was already self isolating when the UK lockdown went into effect. My university classes had moved online, I have friends and family that I could put at risk if I caught the virus, and it generally seemed like the safest, most socially responsible thing to do. Then the lockdown was officially put in place and it was me and my Mum in the house together. Struggling with Chronic Fatigue Syndrome, I don’t go out a whole lot because I physically can’t manage it but I had previously had university classes, seeing friends and family, and swimming at the gym (the only exercise that doesn’t cause me physical pain – probably because it’s non weight-bearing), all of which were suddenly gone. My Mum went out only to food shop and pick up medication prescriptions as necessary.
I’ve only been out once since then and that was to rescue my kitten who got stuck up a tree in a neighbour’s garden – we think she’d been up there for more than twelve hours. And when we did go to get her, all involved socially distanced and wore masks. It was stressful in the face of the virus but my kitten would not come down by herself and we were all getting really worried about her.
Ever since then, I’ve stayed in the house. My mental health has been a monumental struggle during this time, especially my anxiety – to the point that something as simple as laughing from outside or looking through the window at the street can cause severe anxiety and autistic meltdowns. And the longer this goes on, the worse it’s getting. I’m in contact with my psychiatrist, taking my medication, and having online sessions with my therapist but I don’t feel like it’s making much difference to my anxiety.
The easing of lockdown only increased my anxiety. With the scientists and Public Health England still warning of the dangers of Covid, it seemed (and still seems) incredibly irresponsible of the government to be making such changes. When it was announced that hairdressers would be opening on the 4th July, my anxiety sky-rocketed. Ever since the pandemic began moving into Europe, my Trichotillomania has escalated dramatically. It’s been a problem for years but with the recent extreme levels of stress, I’m now pulling my hair out more than I ever have. It’s not only causing pain in my scalp and damage to my hair, it’s also causing terrible pain in the fingers, hand, arm, and shoulder on the side I pull from, as well as tingling and numbness that often doesn’t pass for most of the day. So while I did, of course, want a hair cut (as I think everyone did), I was also desperate for advice and help with this problem. Plus, I go to an independent hairdresser and wanted to support them.
But despite all of that, I just as desperately didn’t want to go. Even with the all the strict safety measures they’d informed their clients of, I still felt overwhelmingly unsafe going out, especially into town. To make it feel more possible, we spoke to them and they arranged my appointment to be as stress free as they could possibly make it: we cancelled the colour to reduce my time there (it felt unnecessary as it was something I could do at home – I’d booked it way back when when it had looked like it would be (or feel) safer, they scheduled my appointment first thing on a Monday morning so the environment would be as clean and safe as possible, and they were happy to have my Mum come with me in case my anxiety got too bad. When we made those arrangements, it felt as good as I thought it was ever going to and we moved on, the appointment still a few weeks away.
But as it got closer, my anxiety grew and grew until I was having panic attacks over it. I didn’t want to go. I really, really didn’t want to go. It felt so unsafe to be going out, even with a mask, gloves, hand sanitiser, and safety measures in place. I didn’t want to go. The anxiety was unbearable and I had multiple awful panic attacks.
In the end, my anxiety just wiped me of all my energy and on the morning of the appointment, I just didn’t know what to do. I had nothing left. So Mum took over, got me up, and took me to the appointment. Even being outside felt terrifying: I felt so unsafe and exposed and vulnerable. We got there and the hairdressers was almost empty, as planned, and my hairdresser was as lovely as always. I’ve been camouflaging my Autism and my anxiety for so long – I’ve spent my life building a mask to help me manage in difficult situations, something that I want to write about more in the future – that most people see the ‘usual’ me but in reality, I was so anxious that I felt like I couldn’t breathe properly (and that had nothing to do with the facemask). I almost destroyed the fidget toy I’d brought with me and the whole experience was just exhausting. It felt like it only added to the trauma of the pandemic and lockdown.
(I do want to make it absolutely clear that that has nothing to do with them as people or a business. It was all about going out and feeling so unsafe outside my house.)
My hairdresser is awesome and so lovely and we had a good conversation about the condition of my hair and the textures that trigger my pulling. We talked about what might improve the condition of my hair and therefore lessen the textures that trigger me, which products might be helpful. So we’ll see how that goes. And simply cutting off the dry ends of my hair will hopefully help with the pulling too.
We were there less than an hour but I was completely exhausted. I was barely functional all day and ended up falling asleep on the sofa at about 10pm, hours earlier than I usually get to sleep at the moment. And it’s taken days to regain enough energy to concentrate and actually do things again. Even now I’m not sure whether I made the right choice or the safest choice but it’s done and I can’t go back and change it. Several people have said to me that going out would make going out again easier but if anything, it’s made it feel even scarier so, for the moment at least, I’m not going anywhere.
The next challenge, I guess, is when gyms reopen. As swimming is the only non-painful exercise I can do, my exercise has been severely limited during lockdown and on a personal level, I’m desperate to get back to it. I love it, I miss it, and I miss how it makes me feel, physically and mentally. But I just can’t imagine how on earth it can be safe. So there’s a lot of investigating to do, a lot of thinking and weighing the pros and cons to do. I’ve never been so jealous of people having their own private pools.
Finding Hope 