Disabled student diaries 2009
Ouch! Special Report
Tips from those who know (Disabled Student Diaries 2009)
Identical twins with congenital muscular dystrophy, Judith and Laura Merry, give their top survival tips on everything from your 24 hour care needs through to making sure you get the much needed equal opportunities when it comes to exam season.
We are, Laura and Judith Merry. After 18 years of having to live with each other, enough was enough and university beckoned. Without a second thought we chose different unis, and thanks to a large van and organised parents we were on our way.
Uni has been a very big learning curve for both of us. Not only did we have to cope with the same problems as everyone else, but we had to deal with becoming as independent as possible and getting enough help. We've survived (so far). Here are our top tips to make sure that you do too.
Don't leave important paperwork to the last minute. Make sure you have organised your Disabled Students Allowance (DSA), student loan and any medical forms as early as possible. It is also useful to make photocopies of any the paperwork which you will accumulate over time, in case you're absent-minded, like ourselves. This might sound painfully obvious, but having a folder with sections such as 'finance', 'university correspondence' and 'DSA', is very helpful. Write a 'to do list' before you arrive. Make notes of meetings you attend, however boring they may be, so that you can double-check what has been agreed and remind yourself of any new information afterwards.
Most campus universities will let you keep the same room for the period of your course. It will become your home from home and your comfort zone for the next 3 years, so you will want to make sure that the whole house is fully adapted to meet your needs. It is best to go for en suite so adjustments can be made to make your bathing experience as relaxing as possible. Plus you don't want to be finding other peoples bodily 'left-overs' whilst you shower or use the toilet. Make a list of any special equipment you will need to hoard in your bedroom, so that when searching, you will know how big it needs to be. If you are residing in self-catering accommodation, check that you can access all the kitchen facilities, so that when it comes to making those late-night snacks, you can do so with ease. If you have many carers coming in and out of your room in the morning, give them a spare key, particularly if you have a specialist electric door. This also comes in handy if you get locked out.
When it comes to studying - the important part, of course - you might need an extra bit of assistance. Contact your uni's disability adviser to make sure you get the help you need. Amongst other things, you may be entitled to have notetakers, extra time for exams and extensions on essay deadlines. The first year is where you learn how to study and get used to the structure of lectures and seminars. If you get behind with work or become unwell, the key thing is to inform your personal tutor or someone you can confide in. Dont let it get on top of you as this can be stressful and make things hard. Uni is meant to be fun!
The life of a student can often mean late nights, coming in just as those pesky birds outside your window start singing, or late mornings. You don't always want to be tied to going to bed just as your friends are heading out to a 'Smurf night' at the union or waking up at an un-godly time to hear the morning chorus, when all you want to do is sink back into oblivion. So how do you get carers to fit in to your lifestyle? Looking at care agencies local to your university well in advance is one method. But make sure that the one you choose fits in with your needs and the life you want to live whilst at uni. Care agencies can be good if you need more experienced medical help and support, but can be quite costly. Another option is to hire other students to help you, meaning you can set a reasonable fee. Advertise at your union, around campus message boards or online at your uni's job site, which many will have. You can handpick the type of people you want assisting you, it's also a great opportunity to make a new friend and they can learn from you as you from them. If you need a live-in carer, be sure to check whether your university provides accommodation for this in advance of your arrival.
In the first week, you can be guaranteed that 'fresher's flu' will be spreading around the uni like the skinny-jeans craze on guys, just not a good thing. Hopefully you won't have to visit a doctor during your time at uni, but since university life is a close community and bugs spread more easily, it is better to be safe than sorry. If your university is near your own GP, it's probably best to stay with them since they know you, and you won’t be forced to explain over and over about your condition. However, if you are living away from home, before arriving at uni, make sure the practice and a local hospital you might have to visit is familiar with your medical needs and with who to contact in an emergency. Prepare an 'about me' file with medical contacts, including the usual details about allergies and how to handle/help you, which is easy to grab on the way out and can be handed over to the paramedics or whoever, if you are unable to communicate.
Work out what you want to eat for the next two weeks and only buy food for those meals, this will save you money in the long run. Put money aside specifically for nights out at the union. Once you've run out, that's it. If you employ carers using direct payments, make sure this is done using a separate account and don't get it mixed up with your personal one!
One of the most important attractions of university is of course the social life, it's a great opportunity to meet new people, get involved with different societies that cater to your interests, and to have the occasional 'what did I do last night?' moment. Due to the wonders of social networking, this memory lapse does not last long. Inaccessible transport and unhelpful drivers can leave it tempting to just stay in your flat. We have found that while you should always leave plenty of extra time for things to go wrong, it is always worth pushing yourself to go out. Clubbing can be difficult for us wheelchair users, being lower down and often not noticed until a drink has been spilled on us. The key is to be as confident as possible, make eye contact and as simple as it sounds, smile and just look approachable. Remember, everyone is in the same boat as you when starting university and is just as nervous.