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.
Mental Health Awareness Week 2020 – #KindnessMatters
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:
- My street’s WhatsApp group – As many streets or communities do, my street has a WhatsApp group and the generosity displayed in it is really heartwarming. People are offering the use of various equipment, like ladders or gardening tools; people are offering to help those less able than themselves; people are giving things away for free, like packets of seeds, cooking ingredients, unwanted furniture, art that they’ve made, and so on. The sense of community has grown so much since the lockdown and that’s really nice to see.
- My neighbour helping us to rescue my cat – When one of the kittens went missing, the WhatsApp group helped locate her (which has caused her to become somewhat of a local celebrity) and the owner of the garden with the tree she was stuck in was so lovely about letting us in to retrieve her (we were social distancing, of course). When I tried to get her and couldn’t, my amazing neighbour climbed all the way to the top of the ladder, got his shirt off while perched up there, and used it to drag her off the branch she was clinging too. He handed her straight over to me for a cuddle but asked for a quick cuddle with her himself to apologise for squishing her a bit while getting her down. He told my Mum later that he’s actually terrified of heights but didn’t even think about it while helping us. That actually made me cry. I’m so, so grateful to him – especially with a fear of heights – for getting Sooty down because even with us standing below her, she seemed absolutely paralysed and unable to get down.
- The generosity of my neighbours – The family next door to us (the father was the guy who rescued Sooty) are just so lovely and have an allotment that they work super hard at. Whenever they bring vegetables back, they give us some and they often share cake or other gorgeous food that they’ve made. They’re honestly some of the most generous people I’ve ever met and I feel so lucky to have them as neighbours.
- The trumpet player on my street – There’s a guy who lives in the street who has offered, via the WhatsApp group, to come and play ‘Happy Birthday’ on his trumpet for anyone who has a birthday while we’re in lockdown. It’s kind of bizarre but then the world is truly bizarre right now and it’s a lovely, special gesture for a birthday that could otherwise feel very un-special.
- The handful of people helping my Granny – There are several people who have been helping my Mum’s Mum with her shopping and computer and series of electrical problems, as well as checking in with her (safely) to make sure she’s doing okay, and I’m so grateful. We speak frequently but we’re too far away to be helpful in the practical sense so I’m really thankful for the people making her life easier and safer.
- The support of my module leader and tutor during the assessment period – This was a while back but still in the lockdown period so I think it counts. I found this assessment really stressful and difficult, whether that’s because I’m still not used to the Masters standard of essay writing or my mental health I don’t know, but my tutor, Dan – who is also the leader of this module – was so helpful. He helped me with sourcing material and gave me really useful feedback. The Masters course is the first time in education where, as an autistic person, I’ve felt truly, 100% supported in my learning, rather than being made to feel like a hindrance, a hitch in the otherwise smoothly running classes. This means so much to me, more than I can possibly articulate. While no autistic person should ever be made to feel this way, it still happens far too often so to have tutors be so accommodating (in such a non-judgemental way) has meant the world to me and made the course possible.
- Kalie Shorr playing a song I’d requested during one of her livestreams – I said this multiple times but Kalie is one of my favourite musicians, Nashvillians, and people. I wouldn’t call us friends but we’ve met several times during my trips to the US and gotten on well (maybe one day we will be friends – that would be really nice). Since the lockdown began, she’s been playing a lot of livestreams, which has been really cool, and during one of those livestreams, she played a song that I’d requested. It’s an unreleased song, one that she posted a snippet of on her Instagram stories ages ago but I fell in love with it and had been desperate to hear more. So the fact that she actually played it meant a lot to me. And by some good fortune, that livestream took place when I was having a really hard week and it really lifted my spirits so I’m really grateful to Kalie for that.
- My friend sending me a Sara Bareilles CD – I’m not sure now whether this was just before the lockdown or just after the lockdown started (anyone else having major issues with judging the passing of time?), but a friend of mine was passing on some CDs, knew how much I love Sara Bareilles, and sent me a copy of Little Voice. As I have the money, I’m slowly collecting my favourite albums on CD or even vinyl, so I really appreciated him gifting it to me.
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.”
My DSA Assessment
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.
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:
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.
