It is all about boxes- and stepping out of them

It is all about boxes these days.

Or maybe it has been about boxes for a very long time?

On the 29^th February, I did my very first lecture at UCC by invitation of the Folklore Department. The title of the talk was 'BOXED OUT:  Art and Disability - A Folklore and Gender perspective.'

It was an interesting experience, on many levels.

At the start of my Into the Light project over 3 years ago, I had said that one of the things I wanted to achieve was to give lectures at University (I felt that there was an element of the lived experience of disability missing from Disability Studies). But when I was this notion looked like it could become a reality a few months ago, it was scary prospect to have to stand (sit) in front of a group of students…

There were many thoughts how I wanted to approach this talk. The main topics: Arts, disability, and boxes. In this case seen from a Folklore perspective.

While preparing for the lecture, what surprised me most was how my creative journey of the past 25 years all brought me to this very day.

My initial art created in Ireland all had to do with folklore; the fairy stories surrounding Dromana house where I lived influenced my Fantasy Folk Artist Dolls. But also the characters that I observed in the pubs or in the countryside made their way into my art. I responded creatively to the Irish folklore that surrounded me.

Fantasy Folk © Corina Duyn

Fantasy Folk © Corina Duyn

 Becoming ill turned my art into the story of illness and disability. It changed into an inner folklore.

To my utter surprise, when I was looking for images of the early drawings, which many were of eggs, I came across the very first ‘visual thought’ - a drawing of a box…

… And I thought that the boxes only came into my art in the last two-years or so…

So, 17 years later, I'm giving a talk about ‘boxes’.  How society will try to put you in a box, and how to step out of them.

In the summer of 2014, when I came up with the idea to make the Into the Light book-in-a-box, I also was working on a sculpture called Stepping out of the Box. The connection between these two creative projects only became clear to me months later… As is usually is the case, somebody else probably pointed this out to me!

Stepping out of the Box © Corina Duyn 2014

In the summer of 2015 I started facilitating the Puppet Project with my fellow members of the Irish Wheelchair Association (IWA). We were to create a series of puppets, make a set, write a script and create a short film. During the first session I brought the little box sculpture with me and suggested, maybe we can make a large version if this and it would allow for each puppet to be created as an individual, and each one can ‘leave the box and step out into the world’. The reactions were amazing. All sort of ideas were floating through the room. Butterfly, a dancer, a biker, a musician,…

Little did I know how powerful an adventure it would become? We didn’t just create puppets. We re-created ourselves in a way. We all stepped – proudly- out of the box.

Life Outside the Box 2016

See the images- stories- book details etc. the Puppet’s very own blog.

The puppets have taken over our lives. They are intent on going on journeys. Two have visited Youghal beach- others are going to Spain on holidays in May.

I believe the puppets are speaking for us. We communicate through our puppets- that yes- we are living with illness or disability- but we are very much part of society in our own right. We are capable of doing many things- including making puppets- create a book- a video- have an exhibition and having an awful lot of fun doing so. We very much live outside of the box.

Over the next few weeks, these two projects – which I can no longer see as separate projects – will be celebrated. The second of the Life Outside the Box launches will take place on Wednesday 16^th March at Waterford City Library (see invite).

A celebration and launch of my Artist Book Into the Light which will be held at The Sanctuary (Dublin) On Saturday 2nd April, 2-4 pm 

Introduced by Sr. Stan (founder of the Sanctuary- a place of absolute beauty and peace), followed by a talk by me.

For further information about directions, book details, Sanctuary, Sr. Stan, see Corina’s Website 

RSVP and enquiries enquiries@sanctuary.ie

These two Box- projects have helped me too. Having successfully guided my group through eight months of this puppet project has given me the courage to do the talk at UCC. To speak up, and be proud of whom I am. What I have achieved.

Even the fact that the platform to access the computer of this ‘high tech’ room at UCC was not accessible for wheelchair users, and my computer was not compatible with the technology, (I improvised - had the students come as close as they could, and shared my story with the help of my small laptop screen), I was not put out by it. It proved my point about disability- and stepping out of the box!

If you can’t make it to the launches, but like the books, they are also available online see my web-shop . (Into the Light is free of postage, Life Outside the Box €1.50 postage)

The Puppet project was kindly supported by an “Artist in the Community Scheme” funded by the Arts Council of Ireland. Into the Light was supported by Rehab Visual Art scheme 

  

Living with M.E. is like having to re-invent yourself every day

My thoughts this morning: Living with this illness (M.E.)  seem to require constant adjustments to my day. I can't take anything for granted.
After living with this illness for 16 years you think that have it figured out.  But my health is never constant. My abilities are never constant. The severity of pain is not constant.  Neither is the amount of energy I have at my disposal every day, or at any given moment.
Every day seems to start with a reassessment.  How am I physically? How am I mentally? Which are activities I have to do today.  Which are optional? What would I really like to do? What would make me happy? What would give me joy?  Can I add these elements to my day?  If so at what cost?

During the initial stages of the illness I was pretty much housebound. Through determination, sheer stubbornness, and learning about this illness I found ways to live the best life I could.  This requires a lot of negotiations. With yourself.

Over the years I became more able to look after myself, which came with a huge sense of pride. Then two years ago my health started to deteriorate again.  I had my 50th birthday and a few days afterwards I became very ill.  You know the sentiment about turning 50, you've gone over the hill... For me it feels like I climbed that proverbial hill, tumbled down and ended up in the ravine.
I have regained some level of wellness since that time, I even made to college, one night a week. But, I have to agree with my doctor that college probably contributed to the fact that my health has deteriorated  further.

Since late last year I am in much more need of support. My hard fought independence is less than it was years ago. This is a hard pill to swallow.  Having to ask for help is not an easy thing to do. (see my story that ended up in the journal.ie )

Living with M.E. is like having to reinvent myself every single day.
Reinvent myself as a woman living with a chronic illness/disability, reinvent myself as an artist, and as a writer.

Lately my art and writing sadly had to find a less prominent place in my day. As a result I started to doubt my creative abilities and the worth of my work, the need to continue trying. This, thank goodness has been put right by some amazing email and a Skype conversations with people involved in (disability) arts.  And to my great surprise I found my artwork on the front cover of a newly published book, with the long title of Explorations in Virtual Worlds: New Digital Multi-Media Investigations for Art Education.
Associate Professor of Visual Arts at Kennesaw State University USA had seen my work in Second Life a few years ago. We've had various email contacts and Rick used my art in lectures in Art Therapy in the USA. Although I was aware of my work making it into this book, I was very surprised to see one piece on the front cover. (egg image: Hatching- digital art-  first published in my book Hatched)

I will continue to create, and to write. I think, I know, deep down that I don't really have a choice. I am a creative being and will find ways to explore this by making adjustments: like writing by using voice recognition software. By continuing to love, observe, and photograph (with telephoto lens so I don't have to get up of chair) all the small happening in my garden, which still is the main source of my (creative) being. I will continue to re-invent myself.

Wishing you all the best and thanks for your continued support.

Out-of-this-world Opportunities for challenged folks: Disabilities, Art education, and Virtual worlds (chapter 16 in Explorations  in Virtual Worlds: New digital multi-media literacy investigations for art education) Rick Garner, Ph.D., Kennesaw State University . 2014. Edited by May Stockrocki, National Art Education Association, US available here


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College: "To do or not to do"

As you might know, I took a huge leap into the unknown last year to fulfil a long held dream of being a student at UCC in Cork. I became a student of Disability Studies and thoroughly enjoyed it. (see posts about this adventure here)
It did however come with rather large challenges. Getting there was one of them, and after becoming very ill from the taxi-bus-taxi journeys every week and staying in Cork for the night to do the journey in reverse the following day, I had some amazing support to be able to go to college by taxi. This sounds rather decadent, but there is no public transport of any kind in my town. I was picked up and brought home that same night so I could sleep in my own bed and fully rest the following days.
There was of course the sitting up in class for the three or four hours, which is a challenge in itself and at the same time you're suppose to stay alert! The 'good old adrenalin' clicked in every time but of course that is 'borrowed' energy and I find it very hard to come down form this artificial high.

I remember a good few nights where I was suddenly aware to be sitting in a class in college among 35 other students. "I am in college" I would think. It made me smile every time. It was as if someone has plucked me from my normal existence and dropped me into this class without telling me in advance.

Another extra energy drain was that I had to do a lot more reading, and spending many more hours on computer to write my essays.

But.
I LOVED IT!

Yes my health was compromised. But I enjoyed being in the class with people from such a diverse background and from so many different countries. I learned so much. I became aware of the wider issues surrounding living with a disability. I relayed a lot of it to my own experiences of living with ME. So many questions arose. My past experiences of working as a nurse in Rehab and palliative care and as a social care worker with people with learning difficulties, and being a creative being all seem to finds its place through this for me new topic.
I became much more aware of the Arts and Disability Culture. How people with disabilities are projected in the media, and how, I felt, that the artist, and the arts can function as a form of education about our lives. We do have a life and we do have a value in society!

But.
After a lot, an awful lot of deliberations, I have decided not to go back to college for the second year of Disability Studies at UCC.

Various reasons:
I have not been able to secure funding: 70% of my travel fund is no longer available this year. The cost, on top of the €900 Tuition fee is too high to bear on my own. It would be much to stressful.

Secondly, it took me about two and a half months to recover fully from the year in college (and surgery I had a few days after college ended). When I started to feel well, 'my well', I realised how much college had taken over my life and impacted on my health.

I am only doing what I had hoped to do for the summer and that was reading more about Disability Art, and life lived with chronic illness. etc.

I came across some amazing books, especially "The Rejected Body", by Susan Wendell comes to mind. Wendell has ME, is Associate Professor of Women's Studies at Fraser University BC Canada. A lot of her writing made great sense to my own experiences. A gem! Many more besides this one. Will tell you more some other day.

My not college orientated reading into Disability Art and living well with Chronic Illness, is well on the way, and I am thoroughly enjoying it.  At the end of this month I will be spending two weeks at the Tyrone Guthrie Centre, for which I received a bursary, to work on my writing about this and create art resulting from it and plan to continue to do so for the year ahead!
When I scribble in my notebook I call this "my-book-to-be" project.

The past year in college set me up for this exciting road ahead. I am immensely grateful to all who supported me along the way, and I will keep my options open to finish the course next year.

Mary O'Grady, Disability Support Officer at UCC, is very supportive in terms of my project, including in a practical sense with Assistive Technology to make working on computer less tiresome. She also has plans for me in connection with Disability Awareness Week and talks with O.T. students.

This way I feel I am still at college although not as a student who attends lectures. I do hope to make use of the library for research purposes.

It was certainly not an easy decision to make. But a long talk with my GP settled it. I am happy with the decision. Even excited about it.

It is funny how I feel a sense of Freedom since I made up my mind. I suddenly have lots of time!
Because it took so long to recover over the summer months, it feels as if I only had a two week break between finishing college and starting again!
Time is a curious thing, and so is the mind!

Be good my dear friends!

Peace in the garden. Peace in the mind.
© Corina Duyn 2013

ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. Many thanks & Lots of love Corina

The arts, study, disability and awards

.. now that is some title. You see I have so much in my head that I don't quite know what to write first!

Metamorphosis © Corina Duyn 2012

So, the Arts, as it appears first in the title. Well, as you know I had an exhibition in the Spring and as I was writing the 'blab' for the gallery, I realised how my work had changed from wanting to be free and"fly away" from illness, to becoming much more grounded. Sculptures like  To be Born and Metamorphosis came into being, all created from roots and tree branches. I think this came about from finally fully accepting chronic illness and disability in my life.



I am aware that we go through many stages of acceptance and every time we think "this is it", and then we come upon some other challenge and have to start the whole process from grieving to acceptance all over again. This time though it feels different.
I felt a kind of freedom from this acceptance, a freedom to stop seeing complementary treatments as a possibly cure to seeing it as helping me to stay as good as I can, and manage the ups and downs of my health accordingly. I can just fully live my life as it is.
Again this I think is evident in my art created during the past year and a half. (Please see the exhibition link above if you'd like to see the images.)

Also, I think it is because of this acceptance that I ended up taking up the rather huge challenge of attending college to study Disability Studies. (One night a week) It certainly was not easy, and I had to overcome many a difficulty, practical as well as emotionally. But. It has brought me further on my path and I do hope to attend the second year in September.

This course has broadened my understanding greatly about what it is like to live with a disability in today's society, and for me personally, it has, in a round about way, opened up my mind to the world of Disability Arts/ arts created by people with a disability.
Nothing new there you might think, but I am now aware of so many artist and their work and it has wet my appetite to delve into the subject much further.
Part of my last assignment was an oral presentation. My chosen topic was "The artist as Educator" as I truly believe and now much more fully understand, that through the arts we can nibble away at the preconceived ideas by people who think they are the healthy ones, that when you are ill or disabled your life is not worth living, and you have nothing to add to society, and that we need to be cured.

I am hoping to write more about all this, and maybe in drips and drabs will put part of that writing here on my blog.

So what about the 'award' bit of the title?
As I am so excited to study Disability, the Arts, my own reflections, and keep developing my own creative output, I had written several proposals for funding to make this happen.
I have been so incredibly fortunate to have been awarded three separate bursaries. The Waterford County Arts Bursary (shared with many others) to spend two weeks at the The Tyrone Guthrie Centre an Artist workplace. I will be accompanied by Jane Jermyn who also was with me when I worked there on my book Hatched  in 2005. I will work on my writing and look for images in nature which represent my life.
Through Artlinks, a support organisation in the south east, I have been awarded a place at the mentoring session for literature later in the year.
The most exciting, I think, is the being awarded the Ted and Mary O'Regan Arts Bursary. This bursary has been set up in the memory of Ted O'Regan and his wife Mary, who were very much involved with anything to do with the arts in County Waterford. Every year family and friends sponsor a few artist to live their dream. The chairperson rang me a few weeks ago with the news that I had been one of two recipients, and that the panel was very excited about my arts and disability project.
To me, it is the recognition that touches me most, for all the bursaries. The recognition that I am on the right path in my life and with my work. Of course the financial contribution from the O'Regan bursary is wonderful too!

Tomorrow there is an award ceremony at the Mayor's Office in Waterford, and afterward I am going out for dinner with a few friends to celebrate my new, or continued path.

The last time I was at a Mayor's office was when I was about 8 years old. Our school was adjacent to a very busy road and traffic light were installed. The celebrate this, I was one of the lucky children from the school to be invited at the Mayor's office. My mother had knitted some very intricate knee socks and I wore them for the first time at this event.
No knitted socks this time!

ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day if you leave a comment...

Many thanks & Lots of love Corina

Long time no see...

It has been so long since I wrote a blog that I had forgotten my log-in details. My brain did spring into action for which I am very grateful!

So much has happened since the last few blogs about my exhibition that I simply could not write as I did not know where to start. But a phone call from a reader-friend from Israel asking me the whereabouts of my blogs, photos from my garden, creative projects... prompted me to make a start anyway. Anywhere.

So, for today, in a nutshell, I finished my first year in college, and have it is in writing that I am an excellent student. Proud or what! Around the time of this accomplishment I had the very unsettling experience of being tested, probed and operated on my breast for suspected breast cancer. It all happened rather quickly. It proved to be benign. Thank you to the friends who were aware of this and stood my me. Thank you.
On a more happier note, I am now the proud owner of a greenhouse, almost to be called a conservatory, or sunroom (when the sun shines). I eat, sleep (midday naps) and pretty much live there. And then last week I spend another week in hospital under the care of the neurologists. An interesting event to say the least.
My course is 'paying' of in a way as I have been consulted by the staff of the IWA (Irish Wheelchair Organisation) to help to clarify their services to the people with mobility or sensory impairment in my local area.
Busy or what!
On all of the above I endeavour to write more, accompanied by images requested by my dear Israeli friend.

So for now...
My garden

...if only I could add the scent of these roses in the blog... Devine! 

ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day if you leave a comment... ? Many thanks & Lots of love Corina

Latest Art works

A short- visual- blog today

Not up to writing, but like to share these little images with you. 

Rejuvenation (detail) © Corina Duyn 2013

Rejuvenation, inspired by the need to take time out and re-evaluate what I am doing,"where I am at"
How to proceed.

Rejuvenation © Corina Duyn 2013

Riding on the Wave of Enthusiasm © Corina Duyn 2013

Riding on the Wave of Enthusiasm, a piece long in the making, and referred to in my writing about college. 

I had wondered if I was just riding along on other peoples, and my own, enthusiasm to be a student of Disability Studies, but that that was all it was. A ride.... On a wave, which I realized after I had started to create it, is something that does not last. At least a real wave is only something that last for a few seconds. Riding on it will land 'me' in the sea... For a while it felt that I was ending up in the whirlpool under the wave and close to drowning. 

I had to make sure that I would land safely on the beach. Happy about the exhilarating experience.

Riding on the Wave of Enthusiasm (Detail) © Corina Duyn 2013

Roller coaster weeks

Where to start...

In my last post about college I wrote how proud I was for having finished my first module in Disability Studies, but also about the challenging experienced in terms of my health.

That same day I visited my GP and had to acknowledge that the course and all that came with it was too much. I felt ill. Exhausted. Full of adrenalin which had kept me going for all those weeks. Still proud and not yet ready to give up, but changes needed to be made.

In fairness the GP was on my side, and together we looked at how I could continue with my course. We looked at medication, and of course pacing.

I did make it to college that week, but only because I had a direct lift to Cork, and did not have to deal with taxi-bus-taxi or another bus... During the lecture, a fellow student asked a few times if I was ok. I slowly shook my head and kept on taking notes, suggesting "don't ask because I am going to cry..." 

All I wanted was to be in bed.

Drawing of me resting © Spark Deeley '09 

And that is what I did for the following weeks. 

A rollercoaster few weeks as I not only did I search for a way how I could still be part of the study but also had to yet again come to terms with the reality that M.E. is the biggest dictator when it comes to my life.

I can have plans but nothing can be achieved without major compromises being made along the way. A sobering thought.

My initial plans for college were to drive myself to the bus, travel to Cork and have a room there. I would stay the night and on the day after the course have the option to go to the campus, or meet with friends. I see now that was rather unrealistic, but I truly thought this was within my scope, as I felt that I was taking the journey in stages and had plenty of times in between to rest/recover. Enthusiasm is a great thing! Maybe the tantalizing notion of independence blurred all reality.

As I have rarely been able to drive during the past few years, I have now come to accept that driving is not within my scope anymore. I am about to sell my car. A car is in a way a symbol of independence, but it has now become more of a liability.

So. Travel to Cork was organised with the support of taxis, kindly sponsored by various organisations.

A little less independence than I craved for, but reality.

Now even that is not reality anymore. I can not cope with this exhausting weekly journey, and be able to sit in class for the evening, and study/read for my course and do the assignments.

Stretched out on the couch, I came up with all sorts of ideas to somehow continue with the course. What eventually came out of it is that all the resources for the travel, and my rent in Cork, was enough to have a direct lift and back to the college on college night. A willing driver, support from college, and funding bodies made this possible. I am soooo grateful. And yet... it hurts a little that I have to give up more of my independence in a way. This might sound ungrateful, but there is very little chance to fulfill my own plans on my own terms.

Last Thursday was the first time I had this direct lift. I was much better. It was lovely to be welcomed back in the class and to reacquaint myself with fellow students and the course material.

What is bothering me though is how I must look like a big "pain in the neck" with all my needs. Living with M.E. is a challenge as it effects every aspect of my being; mobility, brain energy, cognitive issues, stamina. I might seem ok for a few hours, but the fact that it takes days to recover from any activity is not seen by others. Nothing can be taken form granted. It would probably be easier on me and others around me, if I didn't have desires, wishes, plans... But then, if I didn't have this enthusiasm for life and see what I can do with my limited resources of energy and mobility, I possibly would have still be housebound/bed bound. (This has been suggested to me by friends and (complimentary) health practitioners.) 

Throughout the lifetime of this illness, over 14 years, I have set goals, and now see that I always had to negotiate with the illness and myself how I could achieve this goal. It might be in terms of creating art, on having to look at and experiment with different materials and tools which would make it possible for me to create. It might have been in terms of getting outside the door on my own, and after research settled for the use of a rolator and a mobility scooter. 

Usually these challenges are my private concerns.

This time however to achieve the goal of going to college, it meant that I had to accept the help/support in much greater detail from others. Others who don't know me, and are not aware of my life with M.E. to date. Yes, I have needs and I find it a huge mental challenge to acknowledge them, although this might not look like this to others. 

In order for me to continue the course I so enjoy and is so right for me, I have to speak up. I don't want to be that "pain in the neck with huge needs", but glad I did speak up, and ever so grateful for being listened to and having been given another chance to stay in college.

So now, I will follow Robert (Cat)'s advice to rest some more...

As ever, I am thanking you all for your support you have given me. Best wishes to you all.

Proud

Morning to you my dear friends,

... to start with the positive, I am immensely proud that I finished my first ever module in college. "Models of Disability"  I managed to attend all the classes, (5 night over 5 weeks, and a Saturday afternoon), wrote a literature review (800 words), an essay (1500 words), and a short, very short, statement of learning.
I have done it!

Was it easy?
No.
My GP is supporting me in my effort to study, but asks me every time, to 'stay realisic'. I am not so sure I am, or at least not all the time. The past few weeks I cried in the bus (quietly to myself) but, every time I get to Cork I feel better. Excited to be in Cork.
It is of great value to have a room there, as after a bite to eat I can sleep and rest for the afternoon. After the class, it is great to know that my bed is very close by! I can sleep long in the mornings before making my way back to 'the hills' again.

One of the nights, I was worried anyone would ask me, as one does, 'how are you?, and that my response would be accompanied by tears. It didn't happen that way, thank goodness.
My class mates and tutors are great. I do not feel the 'odd one out' when I lie down (in the hall, on a huge comfy couch) or when I walk around on my socks (shoes to sore to have on my feet). Nobody blinks an eyelid. Thank you my fellow students! It is great to be part of this group of interesting people!

I soooooo love the subject I am studying. It has opened my mind to the experience of disability throughout history and the more current role of Disability Arts. It also makes an impact on my own disability and the challenges I am encountering, especially now I am more out and about in society. So much in my head!
Which of course is partly responsible for the drain on my precious energy. You can decide to not walk, but it is hard to stop thinking.
I do compensate by meditation, relaxation, concentrating on my breathing and rely on the trusted sleeping and resting.
I did have a few 'scares' of relapses, but somehow managed to stay on top of it all. Proud of that too, but aware I might be walking a very delicate line...

Still, I am very much looking forward to the next module: Body Politics and the media: To examine stereotypical images of disability in the media and the influence of these images on society’s attitudes towards disabled people.  A subject close to my heart it seems, as every time I read something about this, and the arts, it gets my full attention.

I will keep going and rest when I can! If I do have to give up, what I have learned so far, and the interest it has created in my mind, will be of benefit. My reflexologist suggested the other day: "I feel another piece of writing coming on..." She might be right!

Whenever I know it is ok to share my written work with you, I will post it on this blog.

Now, I will sign off and again thank you for your support.

Love to you all.

ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day if you leave a comment.

Many thanks & Lots of love Corina

Disability Studies and all that comes with it!

Well, I've done it!
I've made it to college and so far, live to tell the tale!
Proud. Excited. Exhausted. Scared. Challenged. So Excited (again and again). On a new road. On a continued road. Confused. Clarity of thought.... you get my drift.

I have been in college now for three weeks. One night a week, and a few days ago I felt for the first time "I Can Do This!" A happy thought.

The first few weeks, I encountered many issues regarding travel, unhelpful bus drivers (not wanting to take my mobility scooter on board), being left off at the wrong stop, trying to get a lift home. All these challenges are now slowly being teased out, which will all help to make the experience a much more manageable one.
I travel on a Thursday morning by taxi (sponsored) to the nearest bus stop (half hour away) and take the bus to Cork city. I've learned that taking a taxi to my "home from home" is the least energy taking-least challenging way to go. In my 'home from home' I make lunch and sleep for the afternoon.
The university has arranged a taxi for me to get to my course (and back). I appreciate this a great deal!!!

Then the REAL work starts!
First an hour of tuition, you know, well, I know now... :-) all these things you need to know on how to use the library, how to write essays, how to put in references etc... And then the REAL REAL course starts. Disability Studies! My brain is rather 'fried' at this stage but so far I managed to stay reasonably with it, with the help of painkillers and the occasional lying down on a couch during group sessions.
(I must say I am proud of myself to have given in to the need to be horizontal, in stead of fighting it, which would have had an adverse affect for days, maybe weeks. It isn't easy to be the 'odd one out' but so pleased I listened to my body.)

"Dipping Toes" © Corina Duyn '12

The course looks at all things disabled, to put it in a nutshell. There was soooooo much information 'thrown' at us that for weeks my head felt like a huge whirlpool of thoughts, images, reflections, notions, learning about my own personal experience. Thoughts about the 'social model' (ie that society makes me disabled) to the medical model (we need to be fixed, cured, rehabilitated...) What IS disability; to how people look at the disabled; me included, is it steeped in fear, fixable by education?; what about historical and cultural issues, anthropology; my art; my writing; how to take notes; how is disablity portrayed in the media, in art; how my work has been used by others in their academic studies; how I suddenly realised that even the correspondence course I did years ago in 'Understanding Western Art' now makes sense too. Soooo much to think about!
All so exciting!

Also the fact that there is a great mix of people on the course, range in ages, nationalites, expriences and backgrouds.

I have settled down a bit and have been able to switch of my brain some bit.
Thank goodness for mindfulness and creativity! And for jobs like folding laundry or dusting the mantelpiece!

Even the reading about, and praticing mindfulness makes more sense now, since I started the course. My life's journey makes more sense...
Although I probably do not make sense in the above rambles!
Trust me, in time to come it will all make perfect sense to me, and when that time comes, I will enlighted you too.

Thanks to all of you who have wished me well and have helped in some way to get me on the road to fulfilling a long held dream of studying at University, but also help me see how I have been on the right road for a long time.

Love to you all.



ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day if you leave a comment... preferably here, on the blog...? Many thanks & Lots of love Corina

Really going to college

Following on from going to college:
After an amazingly turbulent week stuck in the whirlwinds of society and bureaucracy I learned that the funding I had hoped to secure (which seemed to be a absolute yes, months ago) was denied. I am still at a loss to fully understand why. The Department of Social Protection (DSP) (Social Welfare ) had requested clarification on the course level and the awarding body. What eventually came out was that the fact that the course was HETAC and not FETAC (H= Higher, F=Further Education) the DSP was not in a position to pay the grant. But as the same time, in other parts of the country the same DSP had contacted the college to advise prospective students that there was funding available under the very scheme I had applied under.
Confused yet?
I am...!

On Tuesday I decided that there was no way I would be able to fund college, travel and accommodation from my disability Allowance alone. The total expenditure would have been a quarter of my total income. I cancelled my application, with great sadness to be honest.

However I wasn't going to stop studying the subject of the course: Disability Studies, I would just do it on my own, or see how I could get a group together to study in our own time, in our own way.
I felt at piece with this, and found solace in my studio and in my creative ability.

But...
The day after making the decision to cancel and was moving on, I received an offer of total funding for the college fee... I had to think about it for a few hours, but in the end gratefully accepted the offer from this donor. I am not sure yet if I can reveal the source, but I am incredibly grateful for the lifeline handed to me.

When I asked the course coordinator to put me back on the list, she said that she had never taken me off it as she felt that funding would come through from some source or another and if it didn't that it was because I didn't want to do the course.
Now that is faith for you.

link to the full story: going to college

Also met with the O.T. this week. More about this in time to come.

ps... As always it is lovely to know that you stopped by to read my musing 

or follow my creative adventures. 

It would make my day if you leave a comment..

Many thanks & Lots of love Corina

Dipping Toes...

During the past few months while exploring the possibilities of going to college- (see previous post) to study Disability Studies, it felt like I was dipping my toes into the water... testing the waters in a way. How right I was.

Anyway this is the sculpture "Dipping Toes" which I worked on during this time.

Since last week, when reality struck, I started working on two sculpture to reflect on my ride on the wave of enthusiasm and later being stuck in societies web...

So glad I have my creativity to make sense of mental challenges and dreams.

"Dipping Toes" (33x26x29cm) © Corina Duyn

"Dipping Toes" (detail) © Corina Duyn

ps... As always it is lovely to know that you stopped by to read my musing 

or follow my creative adventures. 

It would make my day if you leave a comment...

Many thanks & Lots of love Corina

Going to College

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.

But.

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.

But…

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.
Pushed aside.

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… [1]

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.

---

[1] * 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.?