Going to university is a scary thing for most people. In addition to the usual fears about going to university, those with disabilities have fears of being fully supported whilst studying and doing exams.
My aim in this post although quite different from my other posts is to raise awareness of those with disabilities (in particular my own disability) with an emphasis on those with “invisible” disabilities. In addition to this, I also want to highlight the support that Robert Gordon University gives to those that may need support during their studies.
First of all, I am pretty open about having a disability – those with questions about it and want to ask about it, I am always pretty happy to answer and inform about these things. I wasn’t always like that, I used to be pretty secretive about it but now that it has progressed and become such a big part of my life I have grown to accept that this is how I am going to live my life and deal with it.
Now onto the blog post!
I was born with a genetic neuro-muscular dystrophy disease known as Charcot Marie Tooth disease. This is commonly classed as a muscle wasting disorder which can affect people differently even within the same family. It is said to be quite rare although there are reportedly 2.6 million cases worldwide. It can affect females more than males however like I said it affects everyone differently. I am one of the unfortunate ones who has the condition more severely. I was supported by an amazing genetic professor in Aberdeen and have continued to be supported by her and doctors at my local GP office. Charcot Marie Tooth disease or CMT for short has given me a high arch in my foot and what is known as hammer toes (curved). With this, every time I stand up my feet flattens to the ground and pulls my muscles in my legs which can cause an extreme amount of pain. I also get upper back/shoulder pain as my shoulders have now started to curve as my disability progresses very slowly.
However, during my adolescent years, it had progressed quite quickly where my legs now no longer have reflexes and my numbness/loss of sensation in my legs have gotten worse with time. In short terms, my brain doesn’t receive some messages that my legs send to it and my body can forget to put my foot back down as I walk which can cause me to trip in addition to the loss of balance. Overall, this causes an extreme amount of pain and can cause me to become very tired especially through long days at university. My disability is one where there is no cure currently and medication can be limited especially if I drive (which I do) as the side effects can be pretty harsh.
If you were to look at me though, you would never really notice that I have pain or have a disability. It is shown to be an “invisible” disability which can be annoying when I have to take a lift or park my car in a disabled space and members of the public are giving you weird looks because you don’t “look” disabled. When I tell people who I meet in my classes to be aware that I have this type of disability, luckily every person I have told has been very supportive especially if I have pushed myself too hard and have caused myself to be bed-ridden and cannot move due to pain. Many of them have said “if you hadn’t told me, I would never have known” which is maybe down to my pain tolerance and my ability to just get on with things. I tend to walk with a slight limp and walk very slowly if I am sore.
I cannot walk for very long or stand for very long which can be annoying as I think sitting down during a presentation doesn’t look professional but if I really need to I will take a chair to the front and speak. Tutors have been very supportive of me and accommodating to my needs such as having a chair available should I need to sit down.
I am also very grateful for family, friends and my partner who have all supported me throughout everything I do and admire me for pursuing what I want to do despite my disability but to me, it has just become a part of regular life. I know that I can depend on these people and if I am sore whilst out with them they always give me a helping hand and make sure I get back to the car and inside the house to help myself heal. In fact, a lot of the time they always put the heating up as I have poor circulation in my legs which means they get very cold (although I can’t feel them as cold as they are because of the loss of sensation).
Before I arrived at the university, I was contacted by the Disability & Dyslexia Centre in January to get an appointment with them to see how I could be supported during my studies. It was actually really lovely to hear from them so early on in the year in order to be prepared for me to come to the university. Whilst in the appointment, I had to discuss how my disability affects me. They told me about certain things that they can put in place to make sure I am comfortable in class and make sure I am able to study properly.
I was in contact with the centre constantly and then again in September an appointment was set up to make sure that things hadn’t changed since January and which support would be set in place for me during my time at university. I was so happy to be supported by such an efficient and helpful team and to know they had my back throughout my studies was amazing. They ensured that all of my tutors were informed of my disability and my tutors were all so approachable and helpful which can be hard as even though I explain my disability to people, many people don’t realise how I am actually affected by it. Only my family and my partner know fully as they have seen how badly it can get.
The university has been very supportive of me and I feel that for any students who have disabilities or additional needs and are worried about not being supported at university, please seek out the Disability & Dyslexia Centre if they haven’t done so already. If you feel like you need extra support, please speak to your tutors and see if there is anything that can be done to help accommodate your needs as a student.
Living with a disability really is hard, everyday I have to limit my activities and base my schedule around my medication, my physio and my disability as a whole but I really try not to let it control the things I want to pursue professionally and academically. Yes, I may not be able to go out and drink like every other 20 year old out there but I still have fun and enjoy myself as much as possible with friends and family. The support you get at the university is amazing and I really feel that I don’t need to worry about it as much when I am there, as I know that if there is any problems or changes that I can go to them for advice with regards to my disability. Disabilities don’t have to define what you are, life may be a bit different from your peers but you can still do what you want to do if you put your mind to it!
Sorry for the long and serious post, I just hope I can help at least one person!