My name is Daniel, and I am a 40 year old man with an interest in words, a love of music, some singing ability proven leadership skills, a couple of tertiary qualifications and lots of travelling experience. I have a desire to love, and I have a loving family.
Oh, almost forgot: I have a disability, too.
Here, I’ll to take you through some aspects of my life, to highlight the fact that its possible to live not according to the way the world would have us live, but with real hope despite the difficulties that this entails.
I was born on the second of January 1971 to mum, Johanna and dad, Colin. My life was contentious even then, with one parent believing I had a lump on my back, the other a hole in it. The truth was that I had a hole, or lesion, due to Spina Bifida Myelomeningocele.
What’s that? Spina Bifida is an impairment that happens in the first two weeks of pregnancy, probably due to a lack of folate in the mother’s diet. The tube of tissue that goes on to form the spinal column does not close over properly. This means that vertebrae are damaged and the spinal cord within does not adequately transmit messages from the brain to other regions of the body. In Meningomyelocele, the form of Spina Bifida that I have, there is an open wound on the back and the spinal cord protrudes.
Some time in my very early life I was in surgery – again – to make things a little better. My mother was taking a walk on the road between the hospital ward and the operating theatre, when she met the surgeon who had just finished attending to me.
Mum asked how the surgery went, and was told that it went well, but I would nonetheless die in three days. So my mother took me to home to die in my own cot. I didn’t. I lived.
I had had this “lesion” sewn up very early on, to prevent diseases like viral meningitis from killing me. Later, in my teens, I would have my curved spine straightened using metal screws, wires and rods and a bone graft from one rib. One month in hospital, followed by two of rehab, with the inspiration of Douglas Bader’s biography, Reach for the Sky and lots of Egg Nogs
My hips were more or less dislocated and my left hip is still dodgy, but without needing replacement. My feet were curved and twisted, with the last of the surgery to correct everything happening in 1988, my final year in College. I sat final exams in long plasters.
Also, there’s hydrocephalus. Each of us has a fluid that protects our brains and spinal cords. This fluid drains from the body down the spinal column. If that’s damaged, the fluid has nowhere to go and puts pressure on the brain. A shunt is needed to move this stuff from the skull to some other body cavity. When the shunt blocks up, a bloke has to go in and do the plumbing. He replaces the shunt. Techniques have improved, so that takes far less time in Hospital. In some circumstances, we can do without shunts at all.
The impairment, Spina Bifida causes a number of disabilities. I have diminished feeling and movement of my legs, so circulation can be a problem. Sometimes I get chilblains in winter, and am liable to burn or cut my bare feet when it’s hot.
It also affects my water-works. I’ve had experimental treatment to deal with this in Sydney, involving stimulation with electrodes – I shan’t go into details – to improve incontinence. For many it was a failure, for me, a big help for many years. I have learned to deal with this very difficult aspect of my disability very well, and earnestly desire that others may come to do the same.
Another thing I do well is walk. I walk at work, around shopping malls and at home. I climbed the Vooretrekker’s Monument in Pretoria once, and that’s at least 187 steps, maybe more. These are no handicap to me. Now, walking is crucial because without the ability to walk, one risks so much: losing feeling in the lower limbs, becoming immobile, becoming isolated, changing appearance, gaining weight, getting ill with diabetes and so on, and then losing self-esteem. We can thus become even more lonely and unhappy than would otherwise happen, and this could lead to envy, self-pity, rejection, depression and even hatred. So, if we have a choice about whether we want to walk or improve other bodily functions or not, then we should strive to realise that, and make the most of it. Doing otherwise opens the door to those who would rather see us dead.
Awaiting my 21st Birthday, my “majority”, I found I needed brain surgery to stop my brain descending down my spinal column, a condition called sphyngomaelia or something. Had a very nice eight-day stay in hospital due to a WONDERFUL nurse called Monica. Nurses are my heroes. This episode shows that people with disabilities like mine often cannot expect to experience the same milestones and celebrations as everyone else. We have others.
All this treatment highlights an aspect of disability the fact that our disabilities often take us away from places and situations we believe we’re “supposed” to be in – like school, surrounded by kids – and into places we would rather not be – like hospitals, where you wish to shut out the strange, dark world of pain. I hope for a world that appreciates this experience, and helps us build communities around ourselves flowing these situations, that make a positive difference to everyone.
I started going to the Hartley Street Centre in the inner-north Canberra suburb of Turner, which catered for Children with Special Needs. There, I was often the instigator of activities, the start of my leadership experience, maybe.
When it came time for me to go to primary school, one was to be built at the end of the street where we lived. Ideal. Mum wanted me to leave Hartley Street and meet my potential in the new Hawker Primary School, where the kids’ company would hopefully be more stimulating. It was open plan. So the people came along and they ironed out all the main steps from the plans so that I could get around. Nonetheless, those in control at Hartley Street told mum hat she would have a nervous breakdown if she were to attempt to integrate me into the mainstream schooling system. That hasn’t happened – yet, no matter how hard I try to bring it on. Just kidding. Honest!
I had help from the Community Nurse stationed within the school building to deal with toileting. At this stage I wore nappies. They would help at Recess, my mother at lunch. Dealing with this disabling aspect of Spina Bifida is one of the most difficult, time consuming and humiliating things. Incontinence and physical pain are often cited as unbearable aspects of disability, but they need not be so. Governments and health care systems that value life would help to manage these practically and economically, so they do not become excuses mistreatment – or worse.
Despite the difficulties, in the next six years, I partook in school concerts, often in leading or special roles, went on school camps and had other excursions. I was academically lazy. I dodged homework – especially maths – whenever possible. Mum and dad were lenient on me! I am less than diligent as a result, I think.
I was extremely good at English and loved the opportunities in about year five or six to write poetry. What a great form this is for expressing inner-most thoughts and beliefs subtly
Moving to High School, which was also very nearby our house, I acquired what I thought were new friends, but soon found these adolescent boys had abandoned me. My walking was mocked and the private things I needed to deal with my disability taken from my bag and put on public display, out of reach in German classes. I was asked humiliating questions in history, left out of science experiments and had thing thrown at me in English. The Technical Drawing teacher, a hero of mine who later took charge of some aspect of recruitment for the ACT School System, allowed me greater time and opportunities to try to draw things accurately. He wanted me to succeed, but other boys resented his methods. I was given weights to use in a dark, cold, mouse-infested room in sport, but also liked watching ball-room dancing. I isolated or hid at lunchtime and did hardly any work at all, except in English, which was fun.
I clung to the idea of becoming a journalist, to the exclusion of everything else, although my motivation was actually very poor. Work experience in the Press Gallery of Parliament House was a joy, where I met apparently sensible, committed people. Adults.
It was one of the things that led to my being awarded two leadership and Service Awaards in four years. I was involved in Public Speaking, and the St. John Ambulance Brigade, which I joined during Primary School. I helped to organise protests against school funding cuts, and of course, edited the School Magazine.
During college, my lack of real motivation led me to just scrape in to University. Also I had more surgery to reposition my right foot and sat my final exams in long plasters on both legs, trying to straighten my knees a bit.
At Uni for the first time around, I did a Communications Degree, majoring in, journalism, of course.
Failing a unit in first year divided me from the group of friends and acquaintances I had tried forming, and it hurt. I questioned my commitment and believed that loneliness and isolation would follow me forever. For a guy doing a Communications Degree, I was hopelessly unable to communicate at a personal level, especially with young women, and I despaired to the point of being suicidal. For a long time, I dismissed this as a silly over-reaction to a difficult moment. Now I know that it was very real, a genuine accumulation of emotions and isolation. I got help. I was implored to seek assistance, and shown the impact of my actions on those around me. So I did find the strength to pick up and finish the Degree, although it was hard to persevere.
Having almost failed science at school, I got a job writing science articles for the Canberra Times, and also TV Previews, also a successful column on people with disabilities for the Canberra Chronicle, called Out on a Limb. But when despite this success, there seemed to be no possibility of a job offer from the Times, despite my had to give it a rest.
I covered the Paralympic Games in Barcelona for a Sports Radio station, with my work being recognised by the Australian Paralympic Federation.
I worked voluntarily at the Australian War Memorial’s Family History area, and then was proud to score paid work as an Education Program Assistant. I made a great impact on students, for eight years, doing “Walk and Talk Tours”. This was far longer than any of my colleagues spent in what was basically a transitional uni students’ job, highlighting again that as a person with a disability you are (literally, in my case) out of step with most of the World. Anyway, we taught kids what it means to be Australian, about the Anzac Legend and War Poetry, all of which could be a pleasure.
It’s worth reflecting, I think that the poets in wartime could tell more of the truth than historians with vested interests. We, too are involved in a type of warfare, and, not surprisingly then, Leon Gellert’s poem, The Husband, conveying a man’s feelings about his participation in a frenzied, continual killing should resonate with us. Is this purely about World War I? I ask you:
Yea, I have slain, and taken moving life
From bodies. Yea! And laughed upon the taking;
And, having slain, have whetted still the knife
For more and more, and heeded not the making
Of things that I was killing. Such ’twas then!
But now the thirst so hideous has left me.
I live within a coolness, among calm men,
And yet am strange. A something has bereft me
Of a seeing, and strangely love returns;
And old desires half-known, and hanging sorrows.
I seem agaze with wonder. Memory burns.
I see a thousand vague and sad tomorrows.
None sees my sadness. No one understands
How I must touch her hair with bloody hands.
Being an EPA was part of the motivation I had to do a Graduate Diploma of Education, specialising in Social Science, ESL and Special Education. I found practical experience very difficult in big main-stream teaching settings, especially with ESL, but did quite well in Teaching People with Learning Difficulties. Lack of positive mainstream experience put me off teaching.
Now, I recommend people with disabilities enlist the help of a job agency if they are genuinely prepared to work with you, understand your capabilities and needs, help you make genuine decisions and not just drive you like a hammer or endlessly re-organise your resume. I found a couple of them eventually, and thus got my second “main” job at the ANU answering telephones, for three, long years, but this led to a secondment to the University’s Graduate and Asian Studies library, the Menzies Library, where I have been given opportunities to become multi-skilled. My work is in demand and this has led to my gaining greater self-esteem and a sense of pride in work well done. My colleagues are more compassionate than any to be found in Canberra. Right now I just want more hours, but have less to do the work. It’s a pity
I now concentrate on developing work and extending other talents like making art (and now, writing!) that I had long neglected. My favourite subject? The human person and form, of course, in all its dignity, beauty and wonder!
So far as relationships are concerned, It has been very difficult to make lasting friendships on an equal basis, and certainly to go any further than that is really hard. However, that is what I would like. Nonetheless, Then again, God calls some people to live the single life, assisting their communities in various ways and sacrificing the need for a particular, personal relationship. This is different from the type of isolation and individuality that the modern culture of death fosters, and which I desperately want to escape. Discerning this is hard, with many obstacles to overcome, especially regarding transport to go and meet people, and getting involved in common interests. At the very least, I hope to be able to say, with Tennyson:
I hold it true whate’er befall
I feel it, when I sorrow most
‘Tis is better to have loved and lost
Than never to have loved at all.
At 40 – 40!!! I have never been in a serious relationship with a woman, and this HURTS. There have been a few who have recognised that I am capable of giving and receiving love,. and I would like very much to meet someone special.
Some people like to try and point out that since I have a Spina Bifida, I cannot have sexual relations, but what would they know? And how?. People who say this, sometimes totally out of the blue, have no evidence for saying so, but what they can see, whereas I have had 40 years getting to know my body’s capabilities and limitations.
Also it is wrong to say that if a body is disordered, the orientation or attitude of the person will also be disordered. Nor is it true that those who might find fulfilment of love difficult are somehow “spared” the feelings, pangs and needs that others have. Love is a series of actions, not a sentiment, and to have our loving actions encouraged, accepted and reciprocated is the most beautiful, dignified thing. Love is not always rational. It’s WILD AND CRAZY. It’s not passive acceptance of others’ charity. Only love creates.
It’s a cliché to say that life begins at 40. For me there have certainly been one or two great changes and experiences during the year: the biggest party I have yet thrown, to celebrate the occasion, and an overseas trip – this time to Canada, where no-one else in my family has gone before. It added to my travels in Europe, South Africa and New Zealand.
And now, here’s my ‘blog, Seeds of Hope. These “seeds” mainly consist in lives well-lived, generously shared with others so that we can all can continue living lives to the fullest, unto the end. I encourage you all to join in.