What's the purpose of this article?
Being a student with a disability, learning difficulty, mental health problem or medical condition can be challenging. It can, however, bring its own benefits. The purpose of this article is to bring together a collection of accounts from current or former students. I must stress, everyone's experience will differ. We are all unique individuals. This is particularly relevant if you're considering going to college or university and are expressing any doubts. Perhaps your unsure what support is available to students with disabilities? If so, then this article (and the Guide to the DSA) should go some way to answering your questions.
River85 - Epilepsy, Bipolar Disorder and Dyspraxia
I have epilepsy (simple partial seizures, started at the age of 13 and diagnosed at 18), bipolar disorder and dyspraxia/pervasive developmental disorder (diagnosed at 22). I suppose you could say my experience at university has been a mixed bag. I’ve certainly had obstacles to overcome and many ups and downs.
My A-levels were a very stressful time indeed. I was the victim of an assault the month before starting my AS levels and I found this difficult to deal with. I plunged into a major depressive episode and the stress of this caused my “seizures” to become even more frequent.
I worked my way through my A-levels with little support from school or my family (but, to be fair, even I did not fully appreciate how unwell I was so never asked for help). I seriously underperformed in my A-levels. Due to illness my performance in the exams was quite inconsistent.
I finished my A-levels and, in that summer, I was diagnosed with epilepsy and, with medication, my seizures were controlled. A week later it was A-level results day and, rather disappointingly, I only achieved three Bs (the conditional offer, from Durham, was ABB). At first they wouldn’t let me in. I tried to explain my mitigating circumstances and why I had underperformed but it didn’t move them at all. I persisted though and, after speaking to someone more senior, I was told that if I gave the university medical evidence then they will reconsider my application. I went to my GP, got a letter and the university did agree to let me in after all, success!
So here come my first words of advice. First of all, if you are experiencing difficulties during your study (at A-level or university) don’t be afraid to speak up. Fortunately it seems as though exam boards do take mitigating circumstances into account these days and there is a formal system in place. Also, if you think your studies or results will be affected by illness or disability get advice from your school/head of sixth form. It may be worth asking your GP for a letter; just in case it’s needed (you’ll need medical evidence when it comes to applying for DSA anyway). Just be aware that GP’s are entitled to charge. Most will try and by sympathetic and keep the charge down (if they charge at all). Finally, if you are in the same position I was and you fall short of your offer then be persistent and don’t give up. Inform them you do have medical evidence.
So, I took a year out, did some voluntary work and also sought treatment for the depression. I was placed on Citalopram and things did improve. I was eager to start university and a new phase in my life.
Just before I started university I had my needs assessment. It was a private appointment with the one adviser, the director of the disability service, so she was very experienced and fairly knowledgeable. It was fairly informal, relaxed and comfortable. I gave an overview of my condition and then asked what adjustments could be made. I think my adviser suggested more things that I was able to. A number of things were arranged, including money for books and photocopying and a voice recorder for recording lectures. I was also able to meet with the Disabilities service’s IT technician and familiarise myself with the specialist software and equipment the university provides. This was a great experience, my issues were finally recognised and I was receiving great support.
I received my report two weeks later and managed to all the adjustments and equipment sorted the month before I started university. I know that some LEAs aren’t quite as organised and may take longer.
So, I started university and things were going fairly well. I loved the added freedom and intellectual stimulation university provided. The voice recorder was very useful, I was able to record lectures I also became my college’s “students with disabilities” representative. This position involved listening to the concerns of the other disables students in my college, being an advocate and raising their concerns at the weekly meetings. All the college reps would meet each week and try and resolve any difficulties together (such as trying to persuade the university to improve the student union building’s accessibility). IT was a great, worthwhile experience and, if you ever have the chance to do something like that, I can really recommend it.
Unfortunately, in the second half of my first year, things started to do downhill. My mental health started to suffer and I was referred to a psychiatrist. The depression never really left me, not since the assault (now 3 and half years ago) without going into too much detail; I didn’t get the best of treatment there or even a solid diagnosis. As time went by, my physical health started to deteriorate and I started to suffer from chronic fatigue. Even so, I passed that year and proceeded to the next (my third of four years). I don’t know how I really got through that fatigue, it went on for months. Still, I found my departmental staff quite sympathetic and they were willing to give extensions of my essays if needed. By the summer, after nine months of fatigue, it gradually started to ease.
So, I got to the third year and, although the fatigue had gone, I was still no closer to receiving an adequate diagnosis. I knew that I definitely did have Asperger’s or dyspraxia (I certainly met the profile and my brother was diagnosed with dyspraxia during his time at uni). So I got fed up with the inadequate treatment I was receiving and, knowing that I wasn’t going to pass my penultimate year at (my motivation and passion had just gone) I went to university for help.
The university referred me to a private neuropsychologist (I was reimbursed the fee through the access to learning fund). This was a great help. During our first session we discussed my mental health and epilepsy. I was finally given the diagnosis of bipolar (something I suspected) and he also drew the link between this and the assault, all those years ago. During the final two appointments I was assessed for Asperger’s/dyspraxia. I was then diagnosed with a pervasive developmental disorder/dyspraxia.
It was a great relief; I finally had the diagnosis I was looking for and clear recommendations from the psychologist. I could really see a way forward. Unfortunately, this was still a little too late. I still wasn’t well enough to take my penultimate year exams. As a result I was forced to withdraw from a year (stay at home and not attend teaching sessions) but the university agreed that I should take the exams as a first sit the following year.
So I was slightly disappointed about this but, then again, it was the only real option. I was concerned that I wouldn’t feel like I was part of the university anymore and, as a result, feel out of touch. I’ve been able to prevent this by still making trips to the uni library a couple of times a week, or popping into college and spending some time there. Because of this I’ve been able to maintain the relationship between the university (including important staff) and myself. It has also given me time out of studies to think and reflect. I’ve really been able to regain a sense of how I was (before the assault) and can see myself becoming not just the person I used to be, but a new and improved, stronger version. Also, as far as studies go, I’ve started to regain that passion and interest I once had for my subject. I think the counselling I’ve had (provided by the university as, even with a proper diagnosis, I still couldn’t get any on the NHS) helped enormously. I’m now looking forward to passing these exams and entering my final year (meeting a whole new set of friends) then onto my masters.
So, I think there are a few things I’d like people to take from this. First of all, don’t be afraid to ask for help when you need it. Don’t be afraid to speak up and make your voice heard. I spent far too long receiving inadequate care from the NHS. The help and support was there from the university, if only I’d asked. It would have saved a lot of time and anxiety. Universities want to help their students (it’s in their interests, as much as yours). Things have been touch but then I realise other people are worse off than I am. It has given more added self-determination and a greater focus in life. University is a great experience; I’d hate to see anyone not apply to university just because they feel they may not get the right support. You usually will, universities are far more open to this needs of their students than many schools are, you just need to ask.
Anna_spanner89 - Dyscalculia
Dyscalculia is overlooked in many schools even though it’s a recognised learning disability. When I tell people what it is, they just say ‘so you’re bad at maths and have an excuse?’ I wish!
Dyscalculia has many issues surrounding it. Personally I have difficulty with arithmetic maths, understanding the 24hr clock, counting in sequences, I can count to ten out loud but, after that, it’s a real struggle and also navigating. That’s just a number of things I have difficulty with. Others have different areas, for example I know other sufferers who cannot comprehend finances and money.
It first got picked up that I was struggling in maths when I was in year 2, other children in the class could easily count to a hundred, do basic multiplication and the teachers noticed I was still struggling with basic addition. I remember clearly doing maths and copying what friends had wrote next to me, and being given cards to practice counting when I was 7! At this point they just thought I was simply bad at maths, and I felt a bit ashamed of it as I was good and in the top groups for all other subjects. I went through primary school, copying off friends, not doing my work and just dreading when we’d do maths. It was frustrating for me, as I wanted to do it...yet a part of me couldn’t understand any of it, the symbols and numbers would just be so overpowering I even felt scared of maths.
This carried on, right until year 10, when I had a brilliant maths teacher who picked up on what was going on. At this point I’d given up, refused to go maths lessons and sat on the toilet with my feet up during the lessons! I’d just resigned myself to failing maths! I’d only been to one of this teacher’s lessons in the whole term, and she couldn’t understand how I had perfect attendance in all other subjects yet not maths- to be frank, she was even more surprised that no other teachers had cared. I suppose my previous teachers assumed I didn’t care so they shouldn’t!
I’ll never forget her calling me in during registration in the morning, sitting me down and bluntly came out that looking at past-papers I’d done with school, past SATS results that I had the classics signs of dyscalculia. It felt such a huge relief to know I simply wasn’t stupid! Unfortunately the local dyslexia centre didn’t have anyone available to help with me, so I had to travel about thirty miles once a week for sessions with a mentor who helped me with tips and pretty much started from scratch with me, working around the obstacles I faced.
Unfortunately there’s no direct test you can do for dyscalculia. When I was in year 11, I faced a lot of doubt whether I would actually do GCSE maths, a year on my maths was probably just as good as an 11yr old, and I could barely manage key stage 2 papers. It wasn’t until I was in year 12 and decided I wanted to go into healthcare that I took the plunge. Doing my GCSE maths, without a doubt is the hardest thing I have done to date. Personally I don’t know HOW I did it, I was entered for intermediate maths and did the modular papers and took them over a year and a half...I spent two nights a week with my mentor, cried loads, persevered but when I got that result I was simply shaking with happiness, just a basic pass in a basic mathematical qualification made me feel like the most intelligent woman on the planet!
What always puzzled me was that I only ever understood and could handle applied maths. I could very easily sit down and understand physics...but giving me a straight formula I’d go into the foetal position! Personally I think it’s because there’s no meaning behind it, I don’t understand pure maths as there is no meaning, however when applied to and I could see it working, although it took longer than others I would eventually get there. The process of calculations in my head takes twice as long as the natural person.
Eventually I went onto university to do a Physiology degree. I decided to not to claim DSA, simply as I didn’t see how it would help me, and personally- I don’t class myself as disabled, just someone who has to try that extra bit hard! I was offered extra maths tuition (as I had a maths and physics module) which I took up but I left university (due to a dissatisfaction with the university) before my first one. What remarks me however is I had the strength, after years of refusing to GO to maths lessons (and preferring one-to-one tuition) that I had the strength to go up to my maths and physics tutor, tell him my issue...and simply asked him to go slower, be patient and If I ask basic questions – answer them! I was rather annoyed however he hadn’t been made aware of my condition, and it was a surprise to him!
Now, I still feel a bit unsteady on my feet with maths. However, I no longer find it hard to ask for help, as I know why I am who I am!
kate0904 - Wheelchair user (POTS)
I am a 3rd year medical student and since Easter of year 1 have been having breathing difficulties which result in shortness of breath after walking a minimal distance and fatigue accompanying it. Despite numerous tests and a stay in hospital, the doctors have been unable to give me a diagnosis, which makes it very difficult to access any assistance. The idea is to watch and wait at the moment which is extremely frustrating for me and anyone who wants to know how long to expect a student in a wheelchair around the hospital.
For almost two years, I kept quiet about my problems at university and ended up failing an assignment purely because I was unable to get to the teaching sessions for it. I had to re-sit it paying more than £100 to do so. If I had filled in the appropriate forms, I wouldn’t have needed to pay so have learnt to keep the university updated with my condition, continually filling in extenuating circumstances forms and arranging doctors’ certificates.
In August, I decided I couldn’t cope with struggling to walk round campus, missing numerous lectures and seminars and missing placements as well, so I bought myself a wheelchair. I was under a lot of pressure from the university to take a year out or intercalate and just decided a wheelchair was the only way they would let me stay on the course. Luckily, I am still able to walk a bit which makes things a lot easier than if i was completely confined to my chair. I also applied for DSA. About a month after applying for DSA, I received a letter confirming that they’d help which was quite a relief! The needs assessment was set up for ten days later and would be a home visit to avoid me having to get there to meet with them. It only lasted about an hour but in that time, the guy managed to work out what sort of equipment might help me and anything else that might be useful in order for me to keep studying. Three weeks after that I received the report through in the post with his recommendations and I am currently waiting for the LEA to confirm that they will provide what he suggested. I have found that DSA is a scheme whereby they actively want to help you, in comparison to DLA where they’ll do anything to stop you getting the money!
At university, I have had to meet with many different people to discuss what could be done to help. The disability coordinator at the university was very helpful, suggesting both the wheelchair and DSA. The medical school advisor arranged for all my placements to be in the local area for the year so they could keep an eye on how things were going and avoid me needing to travel on non-wheelchair accessible buses. More recently, the medical school appointed its own disability officer, to make sure that everything on the course was accessible to me and to provide extra support where necessary.
The biggest obstacle so far has been my GP tutor. A failure of communication between him and the medical school meant that when I turned up for my first placement, he was not expecting the chair and the main meeting room, where drug rep lunches were held, was upstairs without a lift to get to it. At the end of my second week there, he told me I had to contact the dean. A fortnight later, my meeting with the Dean informed me that the GP tutor had decided (despite my occupational health clearance) that I was unfit to continue on the course! I was so angry with him and was glad that I could clear things up with ‘the guy at the top.’ Since then, my GP tutor has still been a huge problem. One week, we were spending the morning at opticians – five different places were chosen and the group split up so two went to each. Four of these places were wheelchair accessible. The fifth was not and that was the one he sent me to, and he was well aware that it wasn’t as well. I’m just annoyed that I have to put up with this attitude once a week for the whole year.
More recently, I have been battling with the company who supplied my chair as it was no longer holding it's charge, resulting in me being stranded on multiple occasions and unable to get to many sessions due to it's unreliability. 4 weeks and multiple phone calls later... I finally received the new battery and can get on with things again!
I applied for both a blue badge and DLA in order to get some more help. After being rejected twice for the blue badge as a result of my lack of diagnosis (and experiencing a lot of distress as a result of this), i received a letter from the DWP just before Christmas saying that I'd been awarded the higher rate of mobility and the lowest rate of care! (It was a very nice Christmas present as it ended my battle with the blue badge team). Since then, the money i received has been a great help - I can buy petrol to get to uni without worrying about going overdrawn! I can also now arrive at uni whenever I like and be able to park which has made things a lot easier (no more early starts for midday lectures!).
jeh_jeh - Cerebral Palsy
I always knew that independent living at university was going to be tricky, but I can honestly say - half way through my first year - that it hasn't been as hellish as I was expecting. Okay, so I'm a first year Italian student at the University of Warwick, and I have Cerebral Palsy (Spastic Diaplegia). This is a result of being born nine weeks premature, and suffering massive brain bleeds at birth. The most obvious way it affects my life is in my walking. I can't walk as fast as the average person, and I get very tired very easily. I have a wheelchair here, but I don't really like using it - a) I need the exercise(!), and b) I hate the idea of people viewing me 'differently' which, I'm afraid, they do when I'm in my 'chair here. The CP also affects my fine motor skills - I can't write very fast, and I need extra thinking time in exams in order for my brain to get what I should be doing. It's rather frustrating, to be honest!
My school were completely and utterly useless. Completely. They weren't even sure how best I should fill out my UCAS form. So I guess I've only got this far after a lot of hard work from my mum.
So, yeah, the first thing I did was apply for DSA. I went to my local Access Centre (which, in my case, was Keele University) sometime in May 2008, and I had a very rigorous and thorough assessment. I was recommended a range of stuff - from a laptop, printer and dictaphone to voice recognition software. This was all passed without problem, and I received the equipment and training in due time.
The thing my Local Authority weren't helpful one was personal care for me. I'm not so affected that I need a carer, or anything (which apparently makes the red pull cord in my university room a bit pointless - it's connected to my "carer's" room, and security won't answer it), but I do struggle with stuff like shopping and washing, 'cause they're both pretty physical activities. As it happens, I have pretty lovely friends, so I manage.
The University itself have been very helpful. I have essay extensions when I need them (although occasionally communication between Disability Support and my department seems a bit limited - cue a very stressed me desperately trying to prove why I'm eligible for an extension!), extra time in exams and notetakers in some of the more demanding lectures.
I think that coming to University is the best decision I ever made - it's given me so much more freedom, and everyone here is completely lovely, there's none of the pettiness that I got at school. It's a tough process to get here being a disabled student, but it's definitely worth the battle.
shadow-light - PTSD and DID
I hate my “disabilities”, the main reason for this is that I feel as if I am being punished for the crimes of others... I will not bore you all with the details, but basically my childhood was abusive which resulted in me developing DID (dissociative identity disorder - formally called multiple personality disorder) as a form of defence. This basically meant that where bad things were happening I could “go away” in my own head an someone else would take over. As a child I developed several of these alternative identities, and it was an amazingly effective mechanism which I honestly do feel saved my life.
At 16 my parents chucked me out and I ended up in an abusive relationship. This abuse created yet more “splits” and also resulted in me developing PTSD.
I came to university at the age of 19 having little understanding of the idea that my past was “odd” let alone that other people didn’t have memory gaps lasting several days and hear talking in their heads. I have a total of 6 alters each of whom had a specific role in my protection. Now, however, these roles are redundant but everyone still exists inside and will still “come out” from time to time causing great confusion... for example it’s not uncommon for our handwriting to alter in the middle of work, or for us to sign the wrong name on a register. Also as anyone who is not “Out” cannot remember what took place during any given time we all only end up experiencing small sections of the courses, which becomes even more complex when you take into account that we are of different ages and have different skills... it is not uncommon when one of the younger in the system “comes out” it to be in a lecture on a unsuitable subject resulting in much distress.
The other diagnosis we have is PTSD. This entails hypervigilance, flashbacks, intrusive memories/thoughts and extreme insomnia, all of which affect our studies. We cannot have any form of physical contact with another human being or we will end up having a flashback triggered where we are no longer here, but end up back there, being hurt and feeling the fear and pain all over again... this can be distressing, not only for us but for anyone nearby who sees a grown woman suddenly curl up on the floor crying, or sit in a corner unable to breath, or even run into the middle of a road trying to escape from some invisible foe...
The abuse also resulted in slight brain damage which has affected the way the brain processes information. As such we struggle to read and to write, right now a computer programme (thankyou DSA) is doing most of it for us. We also cannot work out the direction from which any sound comes, which effects our level of anxiety and hypervigilance greatly.
The largest obstacles i have faced at uni are mainly down to stigma and stereotypes... For a start a lot of people do not believe in DID, which is fairly hurtful to me... I cnnot understand what they think is wrong with me if DID is not real, not can I even begin to figure out why anyone would ever think that someone would fake an illness... The second issue I face is that people assume that just because I find language difficult and cannot express myself perfectly I must be “thick”... this is a VERY frustrating assumption :/
Anyway, other than the fact that I feel I’ve picked the wrong degree I think that coming to uni was a great step for me. It gave me a sense of belonging and a focus in my life, it helped me once more feel like a member of society and not a damaged oucast.