Charlotte’s Story- A Disabled Student’s Guide to Uni

A Disabled Student’s Survival Guide to University

Back in 2012, I was 18-years old and desperate to go to university. I could not wait to finish my exams and to start this new, exciting adventure in my life. I craved the late nights at the student union and the freedom. I could picture myself bonding with new friends in the halls of residence. Eating buttery spaghetti straight out of the pan on the kitchen floor, with no parent in sight. I joined every Fresher Facebook page in existence and bought far too many mugs, plates, pans, and recipes books. I counted down the days until the end of the summer, where this whole new life waited for me – an hour and half away from my hometown, Bournemouth.

But somewhere between all the excitement, there was a fear brewing deep within me. It was a fear of not being able to cope with all this change. I was diagnosed with brittle bones at birth when, much to the dismay of my parents, I came out with a broken arm, a broken shoulder and two broken legs. With family and friends always nearby to support and speak for me, I was worried about this huge transition into adulthood. How would I manage? This fear of not managing kept me awake at night and made me scared to take the leap that I so badly wanted to take. But I could not see myself anywhere else at 18 – I wanted to study English Literature and submerse myself in academic life. And so, my dreams for the future inevitably outweighed the anxieties.

For most students, university is a daunting, exciting time of significant change and adjustment. Although every student’s experience is different, university is associated with independent living and adapting to adult life. A report from 2019/20 found that disabled students make up 17.3% of students in higher education and this is increasing yearly.

But university is not all laughter and ‘the best moments’ of your life. It can be tough living in an inaccessible world where the resources that we rely on are not readily available or set up for us. In 2022, Disabled Students UK found that only 23% of students with disabilities received the support that they needed while at university. This is a difficult reality to grapple with. No disabled person should have to fight for basic rights, but we often must. Which is why it is important that we have the right tools to do so.

 Learning To Be Your Own Advocate

For me, one of the hardest, but most important, parts of going to university was learning to advocate for myself as a person with OI. As a teenager, I did not truly appreciate how much my parents did for me. I was so used to having my parents speak on behalf, or alongside, me at medical appointments. They were often my voice, advocating for me within many aspects of my life.

Going to university changed this. I had to learn to be clear about what my access requirements were, because no one else around me knew what I needed. It meant understanding what my rights were and speaking up for myself. Under the Equality Act, universities are legally required to provide accessible spaces for our education – and may sometimes need reminding of their obligations.

I learnt to explain OI in simple, easy to digest terms. To this day, I keep a fact sheet of what OI is on my phone and what to do in an emergency.

Being my own advocate also meant believing in myself, especially when figures of authority were dismissive of me. When I broke my leg during my first year in a night club, I was branded a dramatic, drunk 18-year-old by the emergency services. Thankfully, I was able to show this note to the paramedics in my inebriated state – which helped them to take me seriously.

Learning to explain myself clearly, while being firm and assertive, are all part of self-advocacy. These qualities are not learnt over night – but are vital in terms of adapting to adulthood as a disabled person and will help at university.

Open Day

Visiting prospective universities, especially as a disabled student, is so important. Open days are an opportunity to meet the lecturers and learn about the courses. I visited my prospective university twice before enrolment. Understanding the campus, the university culture, accessible routes, and how to navigate the site, helped to prepare ahead of time. And these days, many universities offer tailored open days with disabled students in mind.

DSA Application

Disabled Students’ Allowances (DSAs) are provided by the government to help pay for extra essential costs that we may have as a direct result of a disability. I used mine for transport, an ergonomic office chair and speech recognition software.

DSAs can help with costs such as items of specialist equipment, travel, and other study-related costs.

What you receive depends on your individual needs, not your household income and you don’t have to pay DSAs back.

Your application can take several weeks to process. It is a good idea to apply for DSA in advance of starting your course. Having your support systems in place will make the transition to university much easier.

Your Disability Advisor

Once your DSA application has been processed, you will be assigned a disability advisor at your university. Your disability advisor can help with any issues that you are experiencing while at university and any access arrangements that you may need.

Financial help: Universal Credit

I was not aware of the financial help that was available to me when I was at university. It is not made clear what you are and are not entitled to. Currently, disabled students are entitled to claim universal credit whilst in full or part-time education if you are claiming Disability Living Allowance or Personal Independence Payment and you have ‘limited capability for work’. As your student loan does not cover the full cost of living, exploring the financial help available with an advisory service, such as Citizen’s Advice, may be a good avenue to investigate before starting university.

Most Importantly… Be Kind to Yourself

Ask for extensions when you need them.

Don’t be afraid to take an extra year to finish your studies.

Don’t be ashamed or afraid to ask for help.

University can be exhilarating and require a lot of energy: so, set aside time to rest.

Take your vitamin pills and medication.

Be gentle on your liver.

And try, occasionally, to eat a vegetable!

10 years later…

10 years ago, all I wanted to know was that it would be ok – that I would be able to complete my degree and enjoy my time in Higher Education. Sitting here with an Undergraduate degree, Master’s and an (on-going) Ph.D., I am proud of what I have achieved. These days, I work in education as an English and Creative Writing lecturer. I am incredibly lucky when I say that I thrived in Higher Education, and I am forever grateful for the memories that I made along the way.

What Do You Want To Be

We’ve probably all been asked at some point ‘what do you want to ‘be’ when you’re older?’ What did you say?

Recently a friend asked me to take part in a study. It was about being disabled and my experience of employment. I was asked a number of questions, which included how I felt when I was younger about employment and jobs.

For me I always answered: “I want to be on the radio”. This was mainly because I genuinely thought I love talking, we listened to the radio everyday at home and that seems the most accessible job for me. Even from a young age I was always thinking about the environment I was in. So when I was asked this question, I just answered how I thought I should answer and what was most realistic logistically.

A job in an office seemed hard to comprehend ‘how would I open the doors? Reach the phone? Go to the toilet? Get into the building’. It sounds so daft now, but for me, I couldn’t figure out how it would all work.

Barriers

When I was younger, I was so busy trying to conquer the next little hurdle like zipping up my little yellow coat or clicking my flower clip in my hair – thinking about a CAREER was just mind blowing and something I couldn’t imagine. Not because I didn’t think I was good enough – I was just a bit busy doing my challenge of the day. I needed someone pretty much for the most part of the day to support me and I’d also be breaking bones left right and centre. Oh and dealing with the controversial dramas of school such as ‘who’s in your top 5?’. My career was the last thing on my list!

Further Education

Anyway, as we talked it was obvious that for me there was a bit of a delay with focusing on my career. It was only until I got to college that I realised I needed to really think about what I wanted to ‘do’. It was between being a nail technician or studying media – and I’m really glad I chose the latter (however I still LOVE doing my nails).

This eventually meant that I would go on to graduating at University, still not knowing exactly what I wanted to ‘do’ but learning to be as independent as I could – employing PA’s and making lifelong friends.

Employment Life

So what’s my point of this post? Basically, if you’re feeling a bit behind in life, that is OK. I’m still feeling a bit behind. But in a world that’s not catered to you, things take a bit longer. The thoughts I had when I was younger were normal, but I wish I could show myself where I am now – in a part time job as well as being a blogger. Employed, happy and still busting those daily challenges. Most doors are automatic at work, sometimes I reach the phone with my pen and I still answer in time and I can even have a wee, wehey.

To anyone supporting someone that feels/has felt like me whether that be a friend, family member or employers – be the cheerleader we need just like my family, friends and colleagues are for me.

Introduction to University

It’s that time of year again – the days are getting shorter, the weather’s getting colder, and half of the UK’s 17 and 18-year-olds are knee-deep in university prospectuses and baffling UCAS emails.

University isn’t for everyone, but if higher education is something you’re interested in, brittle bones definitely shouldn’t hold you back. Even if you’ve had difficulties getting the right adjustments made at school or college, going to university doesn’t mean life has to get even more complicated. With the right support, university can be both an enriching and a liberating experience, offering a chance to gain independence, friendship, as well as the confidence and qualifications to go on to bigger and better things in the future.

Here are a few tips on how to make the transition to university go as smoothly as possible:

Go to open days

Attending an open day at a university you’re interested in is important for any potential student, but for disabled students, open days can be a vital opportunity to survey the university campus, size and terrain, to view accommodation, and to meet support staff. For me, a small, flat campus was essential, so attending open days helped me to work out which universities were plausible – and which would be simply unmanageable. For others, viewing accessible accommodation options could be a make-or-break. Think about what your priorities are before you visit, and if you fall in love with a university which doesn’t seem accessible, don’t give up – talk to the university about how the course or campus could be made accessible to you.

If your parents aren’t able to take you to open days themselves, ask around to see if you could go with friends – or ask your school if they could organise a trip to a university you’re particularly interested in.

Apply for DSA

Disabled Students’ Allowance is a non-means-tested Government grant to help disabled students with additional costs and equipment. After applying, you’ll be invited for an interview, where an assessor will talk to you about what kinds of support might be helpful, and then make a recommendation to the Government. DSA can cover both equipment (like specialist desk seating, laptops, or hearing equipment), and human support (like personal assistants and note-takers), and your assessor might suggest things you haven’t thought of yourself – such as support with field trips or research equipment, which you might not have needed before. The process can take a little while, so apply as soon as you can.

Your DSA isn’t set in stone, so if you find yourself needing a little more help once you’re at university, you can request another assessment. You can also expense reasonable costs (detailed in your allowance), so remember to keep hold of any receipts!

Get to know your Disability Service

All universities have a disability service dedicated to supporting disabled students. Even if you think you won’t need any support at university, it’s worth dropping by to let them know who you are as soon as you can, as they can provide vital help if something changes, such as in the event of fracture.

Say hello! Going to university is a scary time for anyone, but for those of us with OI, it can be especially daunting. Remember, everyone else in your year will be nervous too! University is a great opportunity to start fresh, so put your best foot (or wheel) forward and get out there. The friends you make in your first few days could become friends for life, so be yourself, and say ‘yes’ to as many events as you can – you never know who you might meet!

Ask someone with OI

Remember, you won’t be the first person with OI to go to university! If you have any questions or concerns, why not ask another person with brittle bones who you know has been to university – or ask the Brittle Bone Society to put you in touch.