History of Disability in South Australia

Better to Travel than to Arrive

I was a clumsy child, and as an adult, I was aware that my brain always moved faster than my body, but thought nothing of it until, at about age 35, I realised I could no longer run or jump. A series of tests, including taking a slab of muscle out of my thigh for biopsy, and a painful electromyogram (testing muscle activity by electric shock) confirmed that I had proximal spinal muscle atrophy. The neurologist said I would have about 20 years before I needed to use a wheelchair. He also said there was nothing I could do to make the condition any better or any worse. I knew even at the time that simply wasn’t true – that if I sat around playing the invalid, the muscles would deteriorate very fast. I needed to remain as active as possible.

Earlier than this, at age 20, I had married and subsequently had four children. The diagnosis was both a rocker and a wake-up call. I decided that if I were going to be immobilised I needed to get out and do things before that time, and I also needed to get qualified to be able to earn enough to pay people to do what I wasn’t going to be able to do myself. In a burst of frantic activity I went on climbing holidays in the Grampians and the Flinders, took up philosophy, guitar playing and mathematics and formed a music group in my local community. While working part-time I went back to school to reach matriculation level, and then at age 40, enrolled in an Arts degree at the University of Adelaide where I stayed until I had gained a PhD in psychology. This was financially possible only because it was during the halcyon period where the Federal government had abolished University fees, and actually paid us an allowance to study.

I applied for, and was granted, entry to the Flinders University Post-graduate program in clinical psychology, but one visit to the campus with its hilly terrain, strong winds and heavy glass doors was enough to put paid to that idea. I decided to remain at Adelaide for my higher degree, and while researching my thesis, carried out clinical placements at Glenside and Hillcrest Hospitals, and several Community Health Centres. This enabled me to apply later for classification as a clinical psychologist.

During my last year, the University provided a research grant which enabled me to live in London and study at the Institute of Psychiatry for a year. Arriving at Heathrow airport at 5am was a challenge after a 36-hour flight with numerous delays. I was very happy to get out and see the black London cabs, and know that I was, indeed, in London. I lived a very privileged existence at William Goodenough Hall of Residence in Bloomsbury. In the mornings I would catch a number 62 bus to go to the Institute on the other side of the city, and see a very different side of life. On my first day, with no ID badge I was asked to go the locked ward to do some psychometric assessments. A nurse mistook me for a patient and refused to let me out again until she had rung my supervisor to check my identity.

At that time I was still relatively mobile and could walk all over London at weekends, or catch an intercity train to visit provincial cities. I was able to travel in Europe during University breaks, although the Dutch trams were a challenge. I was once thrown off one for not having validated my ticket being unable, with a heavy bag, to push my way through to the machine in a crowded car. The good Dutch inspector was not accepting any excuses.

On my return home, my marriage had broken up, and for a time, I felt I had no role in society. I was no longer formally a student, or a wife, or mother, since my children were all adult and had left home. Neither was I a worker. It was an odd time. I was suddenly living alone in a cheap rental and having frequent frightening dreams of having an accident of some sort. Then I fell and broke my femur, and this gave me a 3-month space in which to take charge of where I was and recover my sense of identity. I finished writing up my thesis and started looking for work. I was now 48. My thesis was accepted and my degree duly awarded.

Shortly after this I met Erica who has been a constant support, both literally and metaphorically for the last 26 years. She has seen my condition deteriorate slowly over time, and accepted the changes as I become unable to do various tasks and other things like going walking with her. We have survived two house moves, the first from an old house, after 18 years, and now live in a modern place which was designed to allow me to live comfortably with my disability. We looked at many existing places and eventually decided to commission a purpose-built house because of the impossibility of finding somewhere to suit us that did not require extensive modification.

MY first professional job was with the Intellectual Disability Services Council (IDSC) in the Eastern Region, from there I was seconded to be Coordinator of the Tenancy Support Scheme for two years, and then back to IDSC. I wanted to move, and my then CEO arranged for me to have a year in the Office of the Government Management Board (OGMB). Public transport was beyond me by then, and I applied for a government car park in the City but in order to be given this, I had to have a disability parking permit. This was acquired easily, and has made my life much simpler ever since.

From the OGMB I became Executive Officer of the inaugural Disability Services Advisory Council (DSAC). This Council was well-resourced and had a formal connection to the National Advisory Council. The chairs of the various State DSACs met regularly in Canberra. I was based in the Department of Premier and Cabinet, which at that time, was a very happy working environment. Richard Llewellyn, Disability Adviser to the Premier had resigned by that time, and the position as such was not refilled, so various duties fell to me. One was as representative on the ME65 committee of Standards Australia, developing Access Standards. This and my own increasingly limited mobility sparked my interest in the need for access to buildings.
Professor Ian Cox was appointed as a part-time Adviser to the Premier and this continued for another two years in the Dept of Premier and Cabinet. Professor Cox was keen to liaise with other organisations, and to make contact with people living in the country. At one time he requested that the Government Garage convert a station wagon to hand controls, so that anyone could drive it, and Neil Lillecrapp from DIRC and I drove to Port Lincoln with various other stops along the way, holding community meetings and gathering information about unmet needs. These meetings were not all easy, and we heard many sad stories. There were some lighter moments however: Neil, driving in Port Lincoln turned left on one occasion, merged carefully into the traffic, and suddenly our bright green wagon, bearing government plates, was in the middle of a funeral procession, and very conspicuous.

In 1992 the Adviser’s position was abolished, and as Chief Project Officer, I was transferred to the Disability Services Office (DSO) which was to take over the Advisor’s functions. The office was based in the then Health Commission. I had to re-negotiate my parking space, and it was then officially included as a condition of my employment. Because of my connection with Standards Australia I was able to take on an access role in the Office, and this included advising on the DDA which had only recently been promulgated. There were many changes in disability services during my three years in the DSO, including those involved in the setting-up of Options Coordination, and a new advisory council, the Disability Advisory Council (DAC) which, unlike the DSAC, had no Commonwealth connection. We were working very hard at that time to achieve the changes, and I find it somewhat ironic that the whole structure has recently changed all over again. I can only hope the changes are of benefit to the recipients.

During the time I was in these positions, I learned a great deal, and made many contacts. In 1995 I was 62, my level of disability had increased somewhat and I was finding full-time work onerous. I resigned from the Commission, subsequently set up my own business, Capable Consulting, and continued in that capacity for more than 8 years. I took on many jobs, an early one of which stands out. It was to run 10 sex discrimination workshops of 20 people in each, for the outdoor staff of a local government agency. This had come about because of a formal complaint made against the Council by a female worker. This was not one of my easier jobs. None of the men wanted to be there, and after the second session, I didn’t want to be either. In general, however, and because of what I had learned during my recent jobs, I was able to specialise in access requirements, writing access action plans for various agencies, teaching executives and council members about access requirements, and running training workshops for staff.

My mobile phone was useful on several occasions. One very hot day I had an appointment at the University of Adelaide and was unable to find a park anywhere. I rang the Department to let them know, and the person suggested I drive straight ahead. All I could see was a set of double doors, but they slowly opened and I drove straight into the garage of the Engineering Department, which was where I had to be. Another time someone had parked so close to my driver’s door that I was unable to open it. I waited for some time but the offender did not appear, so I rang the local council inspector. He arrived promptly, climbed into my car on the passenger side, hauled himself over the hand brake and gear-stick, and backed my car out for me. As I was leaving he was placing a sticker on the other car.

Because of my interest in access issues, I was appointed as a consumer representative to a National Committee of the Australian Building Codes Board (ABCB). This committee was established to rewrite relevant sections of the National Building Code regulations to formulate what would be the new Access to Premises Standard under the DDA. Apart from the three consumer reps, its members were high-level representatives from all relevant departments and industries. I understand that after 6 years, various parties are still disagreeing about the content of the Standard. This appointment entailed regular trips to either Sydney or Canberra. Fortunately I had friends in Sydney and they would come and take me out in the evenings. Canberra was very lonely; however, I did get to see the Renoir exhibition at the National Gallery.

Double cardiac bypass surgery put an end to my official working life in 2002. I was in hospital for two weeks and required four weeks intensive live-in rehabilitation afterwards. I was almost 70 and reluctantly concluded that I was past going out to work in unknown environments. It was also time for me to withdraw from the ABCB committee. The frequent flights were becoming very tiring, and some of the situations I had experienced at interstate airports were variously irritating, frustrating, or on occasion, downright frightening.

Since 2002 I have done a few short-term odd jobs, but now at 73 I’ve decided those days are over. Last year I had a cardiac stent implanted to clear yet another artery. Erica is still here supporting me, and we are growing older together. Between us we have 7 children who, busy with their own affairs and children, still offer varying degrees of support. We have supportive friends who seem happy to accompany me to various places and help haul me out of seats when I get stuck.

Almost 40 years after diagnosis I am still on my feet, albeit a bit wobbly, and using a stick. I fall over sometimes and need help to get up. I do volunteer work with DIRC, am learning French at the Alliance Francaise and play in a music group which meets weekly. Playing music with other people is very stimulating and is also useful to help maintain my lung capacity which is decreasing. The French is enjoyable and keeps my brain working well. I go to the gym twice a week with a physio to try to maintain muscle strength. I do not know what my future holds, but feel my life has been, and is, worthwhile.

Elizabeth Jardine