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Ghost written for Gwen Beaton by Robyn Perham
In 1983, at the age of 29, we were living in Traralgon, Vic when the first disaster struck my life.
My husband Peter (31) and I were looking forward to the birth our fourth baby, a brother for Rebecca (9), Daniel (7), and Edward (2).
"I'm counting the days before I can resume my career after the birth of Jacob," I said to Margaret, my mother.
Up until the later stages of my pregnancy, I'd worked part-time for a busy motel/restaurant in Morwell as a qualified chef.
I'd always been passionate about cooking. Although I was born with a congenital heart condition, at 16 (I'd told them I was 21) I was running the hospital kitchen in Ceduna. In Darwin I'd even survived Cyclone Tracey and cooked for Gough Whitlam!
Then, on an ordinary day, while out shopping in Morwell in May 1983, my life changed forever when I fell and broke my back.
My three children and I had been on our way to the movies. Coming out of Target, I slipped on an electrical cable that was lying across the floor. My back was broken at the lower spine and I ended up in Morwell Hospital for about three months.
For most of that time I was in traction to keep me immobile and allow me to heal.
Immediately after the fall doctors said that it was a case of either "operate on my back and lose the baby" or "don't operate and save the baby".
On 23 July, Jacob was born three weeks premature and breach. Although he was induced to take the pressure off my back and prevent the break worsening, he was delivered safe and well. At under 6 lbs, Jacob was the tiniest of all my babies.
After Jacob was born my operation was still deemed too risky as the possibility of severing the spinal cord was too great. I have been left with a Grade 2 fracture of the spine just above the pelvis.
I left hospital in a wheelchair with the doctor's words ringing in my ears. "You will never walk again" he had said. But I was determined to prove them wrong.
About a year later I threw the wheelchair away for good. However, that had to be replaced by a walking stick and a walking frame - both of which I still use today. I will have to use them for the rest of my life.
For the next two years I had to wear a back brace. Sadly I wasn't able to be the mother to Jake that I desperately wanted to be. I could not nurse, bathe, walk or dress him. In fact I now had to have help to care for my entire family.
In 1984 my marriage suffered. Up until the accident things had been absolutely fine between us. But afterwards, I felt that Peter was not comfortable with the demands of my condition and that he was simply not able to handle it. He began to stray and a year later we separated and divorced.
In July 1984 I was still in the back brace when I was diagnosed with cancer of the uterus and stomach. A year later, after surgery, a full hysterectomy, and chemotherapy, the cancer was in remission.
In 1995, the kids and I were horrified to hear that the Cancer had come back.
This time I was diagnosed with Thyroid Cancer and a tumour in my chest. After the operation to remove the thyroid and tumour I was diagnosed with a type of Leukaemia which still baffles the doctors. It means my body won't store Iron and the red cell count rapidly deteriorates. I become anaemic and lethargic. About every 12 to 18 months I have to go back in the Oncology ward in the Canberra Hospital for an iron infusion or blood transfusion.
As a young mum I wasn't able to go to football games, camping, or to go out and enjoy the outdoor activities a parent does with their children.
Ironically, the only time I actually managed to get to a swimming carnival, in 1994, I ended up being carted away in an ambulance. I had suddenly suffered a heart attack. I died in the ambulance on the way to hospital, but luckily I was able to be revived.
In 1983 I had received $36,000 compensation after the fall, but I am still in constant pain whether I'm sitting, standing or whatever I'm doing.
Around the house I choose to stay active so that I don't become a burden to my family. And in any case, I fear that the day I sit down for a long period of time will be the day I'll become bedridden and crippled and I don't want that to happen. We've all had enough.
The shock of becoming a person with significant disabilities has been a big jolt for me.
The people at the jazz club I had belonged to were originally very supportive and empathic, but quite soon they all stopped coming around. I lost friends because people did not know how to respond to me when I was suddenly a person with disabilities.
However, there were also big positives. The local Mormon Church in Traralgon, which I'd had little contact with, rallied around and assisted with child care, cooking meals and giving me empathy and understanding. They were non-judgemental and wonderful, especially Mrs White who still remains a good friend and whom my children and I respect unconditionally.
Mercifully, I can still drive, but only short distances. I still do the shopping, but I need my walking frame if Colin is at work. I also need the help of the shop assistants to help me load the groceries into the car. Standing, waiting for someone to find time to help sometimes takes up to 20 minutes and it is very embarrassing. Recently I was even yelled at by a checkout operator because I was on my walking frame but I was using the check-out isle designated for baskets only.
But as usual, the accessible checkout was closed and I had no other option.I felt so embarrassed that I left my shopping on the counter and stormed out, at least I "stormed" as fast as you can while using a walking frame.
While we are out and about I often have to use the public disability toilets. Most of these I've found to be hard to access and obviously not designed by people who use wheelchairs or walking frames. Some places even feel justified in keeping their disability toilet locked so drug users don't use them, but what about their original purpose? Able-bodied people don't have to go looking for a key to use the toilet.
One of the disability toilets in our area has combined it with the baby change room. Fair enough, except that there is still no lock on the door, even after I have complained three or four times. Their reasoning is: if I fall they need to access the toilet. In the meantime, so can everybody else and I don't feel safe! Aren't accessible toilets supposed to have doors that open outwards? Whatever happened to privacy, dignity and equity, or did I loose those rights the day I lost my mobility?
Now, in many ways, I find it easier to just stay home. It's a choice forced upon me by my community.
Over the years I've become increasingly angry at the way I am treated in this country. Australia is not accessible and inclusive when it comes to people with disabilities and Australians, although usually kind, are far from "disability aware".
Even in this, the 21st century, I'm discriminated against constantly, most notably in the media where I'm referred to as "a disabled person". This is not only disgusting and immoral, it's illegal!
Amazingly, I have had people say to me, "You are so lucky you have a walking frame". My reply is, "Well, I just hope you are never as lucky."
For a while I thought I'd like to stay involved and active within my community. When we moved to the Belconnen area of Canberra in 2001, I wanted to establish links in the district and make a contribution and I doggedly tried to get out there.
At that time, with 2001 being The Year Of The Volunteer, there was a big push to get volunteers into all sorts of areas of the community. I rang up organisations where I thought I could be of assistance and initially they were enthusiastic.
"Sure, come in and see us. We are certainly looking for volunteers" they'd say. But when I walked through their doors with a walking frame it was quickly a case of, "Oh, I'm sorry we don't have any vacancies!" Or they'd want to check with their insurance company first to see if they would be covered while having me involved.
It's left me feeling worthless and almost suicidal at times. So much for empathetic church organisations these "Christians" were more concerned with liability insurance than compassion and acceptance.
The kids had been the most devastated when I became a person with disabilities because I was no longer able to be there to support them and nurture them. But it did make them very protective and supportive towards me.
Unhappily, my eldest son Daniel was diagnosed with ADHD. It broke my heart when I had to give him up to foster care, but he needed to be with a family who could manage him more effectively than I could.
I was so relieved that Daniel was living on a farm up in Queensland with a wonderful couple who didn't have any kids of their own. We didn't lose touch, however, as he always came around for Christmas and for family birthdays. I'm happy to say that he lives near me now with his two other brothers.
My beloved husband, Colin, has been a tower of strength, taking care of me, doing the housework and during the past five years he's been doing everything that I'm unable to do.
For over a decade and a half after the accident I was alone. Except for six months when I'd married my best friend, Bob because he did not want to die alone in a hospice surrounded by strangers.
I was basically living a reclusive lifestyle. I didn't even bother to pursue a relationship because I felt that no man would find me attractive enough to want to go out with me or take me on.
Looking back, I realise that there had been men who had tried to get close to me, but I'd pushed them away. Mistakenly I'd felt that my health issues and disabilities were too much to burden someone else with, so I'd struggled on through life as a single parent.
That was until I came to live in Canberra and a good friend Sharon enrolled me in the on-line computer dating service RSVP. The computer matched me up with Colin in March 2000 and we corresponded by e-mail for about four months.
Right from the start I was up-font with him about everything and I even tried to discourage him for a while.
Luckily, he pursued the relationship and we clicked. Probably the fact that he works with people with intellectual disabilities helped a lot as the word 'disabled' didn't phase him.
When we finally met in June 2000 my children, who were still very protective of their mum, insisted on chaperoning me on our first date. Over the ensuing weeks they still kept a wary eye on him - until they found out he like football.
In 2001 we went shopping for a house. We had to plan for the probability that I may end up back in a wheelchair as my health deteriorates with age.
So our criteria for our home included things like: single story, big rooms, open-plan kitchen, built low to the ground, able to have a ramp fitted when required, and easy access to the garage and garden. There weren't many of them around, but we eventually found one.
Then we set about building wide garden paths and we've had grab rails installed in the toilets, bathrooms and at the back steps.
I bless the day Colin came into my life. We married in February 2001. Colin is so caring and wonderful, and has helped me restore my self-confidence. Although I still have doubts sometimes, and I feel depressed and anxious occasionally, he's always there for me and, all in all, life seems worth living once again.
If only the rest of Australia was disability aware and proactive in providing an accessible community for people like me. After all, people with recognised disabilities make up at least one in five of our population, and the actual figure is even greater.
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