Going to College
(Corina Duyn 5-9-’12)
Fourteen years ago I was in the process of applying to go to college to study Art Therapy. However, I became ill with the debilitating illness M.E./CFS and had to forgo on the idea. What I didn’t give up on was the wish to study.
A quick tour of the fourteen years that have passed since: The first few years were spend more or less housebound due to the severity of the illness and resulting disability. To be able to live at home, on my own, I eventually received support through the provision of home-help, seven days a week, twice a day. A life saviour, so were the friends that supported me and kept me informed of the life that went on behind the four walls of my house and garden.
Art and writing became another lifeline to help me deal with the limitations and changing lifestyle I was experiencing. I drew eggs, painted birds, wrote in my notebooks about a spider in my bedroom, which was as inactive as I was. Art and writing ‘informed’ me how I could make the most of what I had, to value the environment I was living in. I was able to have a life on paper. In a way I did my own Art Therapy study!
The wish to study continued though, and years later I settled for a correspondence course with the Open College of the Arts. This allowed me to study when I was able, even if this meant just one hour a week. I chose Understanding Western Art. It took me two years instead of the 7 months suggested to complete the course, but it was a proud day when I received my certificate. Studying gave me a purpose to my day. To my week. To my life.
Encouraged by local librarian and the Arts Officer, I translated my art and writing into my first book Hatched. Again a proud moment in my life lived with illness.
Writing became more and more important in my life, as much a tool to help me make sense to my life, as it was a way to use my creative mind. It was an activity I could do with the limited energy I had. All I needed was a pen and paper. I could write lying down needs be. These thoughts resulted into undertaking another course: Starting to Write. I loved it. Again the course took me longer than average. I did it and received very good marks for my efforts. One of my stories won runner up prize at the IWA Writing competition in 2010.
Correspondence courses are solitary activities. I longed to be part of a group to fill the need for social contact. To be part of society. A big aspect of living with M.E. is, in my personal case, that I am very limited in my energy and mobility. This impacts hugely on how much I can do outside of my home.
Going to college stayed a wish. A big wish.
For about a decade I had requested if it would be possible to partake in one class as part of the VEC Art and Design course. For me this would mean a daytime course, in which I could learn about art hands on, be taught, be part of a group and learn together. It would get me out of the house at least once a week, and not just for hospital appointments… It wasn’t to be. You had to either become a full-time student, or not at all. After a while I gave up asking, because every summer I got upset of hearing of people going back to school. Studying. Every September I felt left out. I know that this is a very subjective observation, because of course not everyone is going to college…
In 2011 however, I attended an information day here in town about education and health. I talked with representatives of the VEC, and with guidance councilors and stated my case again: the wish to attend one class.
A few months later I had an interview with the VEC. I was pleased to see that the building had been adapted for wheelchair use. There was a ramp and an elevator to the second floor. The course coordinator and a guidance councilor were present at this interview. I felt understood and was told I was not the only person with this request. ‘Good’, I thought. I felt elated to be listened to and understood. A few weeks later I received a letter from the guidance councilor that the course coordinator had confirmed a place for me. I would start a weaving class, the starting date would be confirmed later. Thrilled! I was going to college! That is was only part time- every second week for one afternoon did not dampen this excitement. Not at all.
I heard from a teacher friend that the courses about were about to start and she looked forward to seeing me in college. I hadn’t heard anything from the college since that letter of confirmation. When I rang, I was told that more full-time students had signed up for the course and there was now no room to accommodate me.
I felt gutted.
My teacher friend spoke with the weaving teacher what had happened. She had no problem adding me to the class. In the end I was given a chance to fulfill my dream to study- but it was made clear to me by the coordinator that I was there as a ‘favour’ as an ‘extra’. This hurts, to be honest, but I didn’t let it stop me from attending class.
I loved the course. I loved going to college, being with other creative minds, learning a new skill, and finding that I absolutely loved weaving. I received very high marks for my work and portfolio. At the end of the school year I asked the coordinator if there would be a place for me to continue the course for the second year. ‘We’ll see. I am not sure.’
No contact was made by the VEC to say when this years course was to start again, and if I did or did not have a place to continue the course. An oversight perhaps?
One point that stayed on my mind in all this was, why make a building accessible for disabled people, but not the courses.
Having attended this college for one year, every second week for one afternoon, when able, made me much more confidence that I can go to college and study.
During the summer I kept coming across a Continuing Adult Education course in UCC: Disability Studies. It caught my eye. It caught my imagination. Here is a course, which might just help me to use my writing in a more focused way. I know a thing or two about living with a disability. I have experienced first hand how society views a person with impairment. My own personal experiences and those from the time I worked as a palliative care nurse and social care worker with people with learning difficulties.
A long telephone conversation with the course coordinator from UCC fueled my enthusiasm for this field of study. I could do this. Couldn’t I?
I place was reserved for me to give me time to sort out the financial and practical issues surrounding this (big) decision.
Finance: I learned that there is only financial assistance available if one attends a full time course.
It is unlikely I will ever be well enough to study full time. So, I had to be creative in finding ways to fund this new direction. I contacted various agencies and disability support groups, and researched student finance in great detail. I believe that this course could help me to play an active role in society, within the restriction of my illness/impairment, and possibly give me some form of income in the future, maybe from writing articles. Yet, like the correspondence course I have to finance this route myself. Society/ Government has not looked outside the box to aid all people who would like to make a contribution to society on their path. This is not a recession related issue. No facilities for people with a disability only able to attend part-time college were made during the so-called Boom-Years.
I was delighted to receive likely support towards fees from FAS, however this was put in doubt yesterday. There is only funding available via this route up to FETAC Level 6, According the Department of Social Protection, this was not clear on the application made my FAS on my behalf. Requests for clarifications were made to the college by FAS but so far no clarity have been given. I hope these issues will be resolved with a positive outcome. Without this funding, about half of the course fee for one year, it is very unlikely I will be able to afford this study. If I do receive this funding, than it is only for this first course year. How I will finance studying next year? No idea.
Of course it is not just the college fees that I have to find to finance this study.
I need physically to get to college. I am unable to drive there. Although I qualify for Free Travel, there is no public transport from my town. I need to ask a driver to bring me to Cork, or to a bus stop half hour away from here. Or hire a taxi to and from the bus stop.
To be able for me to attend the night class, I need to stay in Cork for the day and night. I would have to rest before the class commences and travel back home the following day.
The UCC Disability Support Officer I met last month was very helpful in supporting my wish to study. Transport would be organized to collect me, and bring me back, to my room I will be renting for the duration of the college year. Also I will receive help with practical issues in college, like the use of the library. This is so heartwarming. I felt supported. To be able to receive this support, I need a letter from my consultant to state my disability/illness. I requested this on the same day of the meeting. No letter has been forwarded as yet.
No letter. No support.
On a practical note: I use a mobility scooter to travel any distance greater that a few minutes walk. Over the years I have bought my own scooters as the health board wouldn’t fund one. Their reasoning is that I am ambulant. I can walk. Years ago I was told by the Occupational Therapist (O.T.) ‘it might make me lazy to use a motorized aid…’ This was the general view of the HSE, he told me. That my freedom to move around ends at the end of the street, did not seem to make any difference. Without the scooter, I will not be able to partake in society, to do my own shopping, to go to town and meet friends. (The Mission statement from HSE regarding disability: 6. To help people with disabilities to achieve their full potential including living as independently as possible.). Another section of the HSE is of the understanding that I am not able to walk, as they awarded me so-called Primary Medical Cert, a cert very difficult to obtain, as the criteria are very strict indeed. So one HSE department suggests I can walk, the other does not. I have been given manual wheelchairs over the years, but am unable to propel the wheels for anytime longer than a few minutes. I need someone to push my chair, which again limits my independence.
My scooter needs maintenance or replacement. The use of a working scooter plays major part in me being able to attend college in UCC.
In April of this year a request was made by the Public Health Nurse to the O.T. for me to be assessed again. She made a new request in July stating the wish to attend college and need for a motorized mobility aid. I have not yet received this assessment. It is now September. College is about to start in 3 weeks.
The O.T. did ring yesterday, on request of the Public Health Nurse. ‘We can not do maintenance on your scooter, because you bought it yourself….’ I stated my case again and was told that my file will be looked at in 2 to three months… 
I am fully aware that my case is not unique, that there are people with a disability/ illness that have much bigger issues to overcome, like the current decision by the Government/HSE to cut Personal Assistant hours for the Disabled. (Have they any idea?). I am so proud of the people affected who protested at Government Buildings overnight and had this decision reversed.
My story is only a fraction of what is happening- or is not happening- in the world of people with a disability. I believe I can use my voice to add to the debate. I believe that this course in Disability Studies, will aid me to be part of society again. It will fulfill my fourteen year-long dream to go to college. My life has changed utterly since that time, but I have come to terms with the fact that I more than likely will have M.E. affecting my life in a very profound way for the rest of my life. I have never given up on life. I have created a good life within the restrictions put upon me. A life of creativity which will always be part of me. Right now though, I am at a crossroads, a major one. Can society: the O.T. (scooter), Consultant (letter to gain support in college), Social Welfare/Government (finance), help me to take this new path?
I am not trying to argue that just because I have and illness/disability that all my needs need to be met, that all study should be fully funded. What I am trying to argue is that society could at least meet me half way, and not put up any further unnecessary road blocks.
 * I rang to O.T. to suggest that maybe I can meet him at the hospital instead of waiting for a further few months for a home visit. This proved to be no problem at all. Why was this not suggested by the O.T.?