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 18, 2020
This week is Mental Health Awareness Week. Originally, this year’s theme was going to be sleep but with the impact of the pandemic on the world’s mental health, the Mental Health Foundation changed the theme to kindness:
“We think it could be the most important week we’ve hosted, not least because our own research shows that protecting our mental health is going to be central to us coping with and recovering from the coronavirus pandemic – with the psychological and social impacts likely to outlast the physical symptoms of the virus.”
Their website offers some really powerful insight into the importance of kindness:
“We have chosen kindness because of its singular ability to unlock our shared humanity. Kindness strengthens relationships, develops community and deepens solidarity. It is a cornerstone of our individual and collective mental health. Wisdom from every culture across history recognises that kindness is something that all human beings need to experience and practise to be fully alive.”
We all know about Captain Tom Moore’s incredible fundraiser and Dolly Parton’s massive donation towards researching a cure, as well as other wealthy and/or famous people giving money to various charities that support all kinds of people struggling during this time. These are all amazing acts of kindness but the foundation are encouraging people to share acts of kindness they’ve experienced so I thought I’d list some of mine:
Another one of the focuses of this week is to think about how to build a kinder future. I can’t explain it any better than they do so, again, I’m gonna post what they’ve said:
“We have a once in a generation opportunity not only during but also following this pandemic for a reset and re-think about what kind of society we want to emerge from this crisis.
Our own reports and others such as Sir Michael Marmot’s 10 years On report reveal how inequality is rising in our society and its harmful effects on our health. Life expectancy is falling for the poorest for the first time in 100 years. As child poverty rises, children and young people in the poorest parts of our country are two to three times more likely to experience poor mental health than those in the richest. After the 2008 credit crunch it was the most vulnerable in our communities who experienced the severest consequences of austerity, with devastating effects on their mental and physical health. This not the hallmark of a kind society. We must not make the same mistakes after this pandemic.
Applied kindness could have a transformative impact on our schools, places of work, communities and families. As the former Governor of the Bank of England, Mark Carney, has said, now is a time to put values above valuations. We must seize this time to shape a society that tips the balance in favour of good mental health, for all of us, but especially for those who are most vulnerable.”
I have to hope that the kindness I’ve been seeing, the general community focussed behaviour and mindset will only continue after the lockdown ends, even though our lives will be busier, with work and school and so on. We’ll go back to our normal lives but that normal doesn’t have to be the same as the old normal. Hopefully we can build a new normal, one that’s kinder, more connected, more neighbourly, and more flexible, because of this experience with the pandemic and the lockdown. How beautiful would it be if we could create something so good out of such a difficult, distressing time? It won’t, of course, bring back the people who’ve died but perhaps it could be a tribute to all those who have suffered during this time. Maybe it’s naïve but I have to have hope.
I couldn’t make this post without acknowledging the incredible courage and strength and… kindness isn’t a big enough word by far… of the all the NHS staff, care workers, key workers, teachers (fuck the Daily Mail), and all those working unimaginably hard to protect us, keep us safe and healthy and moving forward despite everything going on. We can’t thank them enough. We’ll probably never be able to thank them enough. Someday, somehow, I’ll figure out a way to say a proper thank you, a way to give back and help people in their honour.
But coming back to Mental Health Awareness Week, the Mental Health Foundation are, as I said, encouraging people to share the acts of kindness they’ve experienced or witnessed, using the hashtags, #KindnessMatters and #MentalHealthAwarenessWeek on social media. You can find out more and access further resources through their website. And to quote them once more:
“No act of kindness is ever wasted.”
Category: anxiety, covid-19 pandemic, death, depression, event, mental health, quotes, response Tagged: a kinder future, acts of kindness, captain tom moore, care workers, community, community spirit, coronavirus, covid-19, dolly parton, family, future, grateful, key workers, kind, kinder future, kindness, kindnessmatters, lockdown, mental health awareness, mental health awareness week, mental health awareness week 2020, mental health foundation, mental health in the media, mentalhealthawarenessweek, NHS staff, pandemic, quarantine, teachers, the mental health foundation, university, university support
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, 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 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 (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.