We all packed our bags the night before, so in the morning all we had to do was pack the last minute things like toothbrushes and deodorant. We got up at 7am and were meant to leave home about 9-9:30am, but as the day progressed things kept going wrong. First, mum had to go back to the shops to get her phone working because she spilt water on her phone the other day so she had to get a new one. Second, mum had to go to the doctors to get her arm checked out because she had blood taken the other day and it had swollen in the morning when she got up. Third, mums partner had to ring up the dentist because he woke up with a bad toothache so he made an appointment, which turned out to be for 10am. Fourth, we tried to print off some receipts because we paid for our accommodation 6 months earlier, but the printer died, so once we were packed we had to see a friend so he could print them off then, finally, about twelve-ish, we were off for our four hour drive, to Adelaide.

We were about half way when mums partner got a phone call saying the change-table mum had ordered for the bathroom, so mum could take my sister and me to the toilet and shower us, would not fit. Confused, mum pulled over and rang the accommodation only to find out that they booked us the wrong bungalow. They had us in a small cabin where my sisters’ electric wheelchairs and I would not fit as they take up a lot of room. They then offered us a cabin with no wheelchair access and it had a few small steps. After many more discussions – mean while we were still sitting on the side of the road trying to explain we do not physically fit in the cabins and why every time we go to this particular place we stay in the biggest bungalow. So as they could not help us we turned around and went straight back home.

It makes me furious because people don’t understand. People say, “Yeah, sure, just go on a holiday” or “get away for a few days, you’ll be right”. I often laugh and say it’s impossible because they don’t understand how hard it is trying to find the right accommodation. I joke with my sister and my mum and say that it’s ok we’ll magically walk for a few days, no problem. Especially when one of our wheelchairs breaks down and the people fixing it expect us to sit on the lounge for the next week while they fix it. Yeah, like I don’t have a life or anything.

The only excitement I had on the trip was when we were sitting on the side of the road, I saw a mini-van exactly like the one in the movie “Little Miss Sunshine” but it was blue instead of yellow, which made everyone laugh as I said, ‘Quick! Act normal!’ I love that movie.

So that was our holiday ruined, once again. I feel really jealous of those who can get away and not have to worry. People who are lucky enough to experience time away and actually enjoy your self’s you are very lucky people indeed…

I’m happy that we didn’t get all the way there and then find out we had to go home again because during the four hour drive there is no where we can stop and go to the toilet. Last time we went away I was meant to get a biopsy. We drove the four hours because we can’t fly, and then I had to starve for eight hours before my biopsy which I thought sucked but I understood why. I got to the hospital with my twin sister, mum and her partner, sat in the room and the nurse guy was asking me questions. He left and came back and said, “I don’t think we can do a biopsy on you.” One, I was absolutely devastated because I was missing my study, and two, that my sister and I wouldn’t be finding out what particular Muscular Dystrophy we have. The last time they did a biopsy we were 2 years old, they did not store the muscle properly and it was no good. They didn’t want to do it on me this time, I’m now 20, because they were scared how I would react with the antiseptic as it was dangerous and because they think I did not have enough muscle for a biopsy. So now I will never get to know what particular Muscular Dystrophy my twin sister and I have. But you never know with the technology these days, one day I might eventually get to know the truth…

My name is Joanne Blesing and I was a successful Melbourne designer. Over six years ago my illustrious career was irrevocably disrupted by MS. I took my diagnosis in my stride. I returned to Adelaide for the support of my parents whilst I recovered enough to resume a somewhat normal life.

My initial diagnosis however, turned into a rapid onset of full blown chronic case of secondary MS. This combined with a spinal injury sustained as a result of an earlier car accident made for an unbearably painful daily existence for which even doctors had no solution.

At this low point, I completely withdrew from all social interaction purely and simply for the purpose of personal survival.

2 years ago, after 4 years of waiting, I started my personal battle to fight again for my health. This included the initialisation of the 1000 document submission and justification process for an electric wheelchair to which the end result has been Julia Farr through the MS McLeod Benevolent Fund, providing me a grant for the new ‘Levo’ electric standing wheelchair which is the first of its kind in South Australia. The grant also covered an exercise bike of an amazing style, which I had been able to cycle at rehab, (even though no one believed, it had been possible the years of cycling previously in my life as a triathlete allowed the memory to remain within the nervous system). The purpose of this grant is to research the impact of these innovative pieces of equipment on my active participation within the community and to identify and promote the benefits that result, so that others may be given the opportunity through the government funding.

Through my desire for personal growth and change, not only did I achieve the above, I also managed to acquire for myself a voluntary lecturing role at Adelaide University this being my first step in the direction of social reintegration.

Through determination and willpower, www.imageshift.info was created to shift as few or as many into a different state of consciousness.

The planning of this event has been achieved in spite of multiple, adverse factors and is the first stage of a larger framework for the return to work and society.

Five months ago now, I was granted the Levo C3 standing wheelchair. This amazing piece of technology has enabled me to stand up, providing independence and a new level of mobility.

Being able to be elevated to standing height makes such a difference in my mobility, and has increased my level of independence. But apart from the obvious physical advantages, one of the real changes has been to the way others see me and the way I see myself.

Being at everyone else’s level gives you a presence, makes you feel equal, and allows you to see the world from their perspective. It’s been amazing for my self-esteem and morale.

Whilst I can say that giving up was never on my radar, my new sense of self with the combination of my background of design and creativity, my desire to recreate and reestablish myself into the public eye, and obviously my experience of living with a severe disability, sparked the creation of “Image Shift”.

A Black Tie Masquerade Charity Dinner with the inclusion of a fashion parade of support team and the disabled was my way to make a difference. I wanted to give others the opportunity to be made glamorous, feel beautiful and play dress up – not only those in the parade but those attending as well. I had been playing dress up and presenter for years before my illness, and love the Melbourne designer within. I want to impart this knowledge and belief to others that may enjoy this aspect of life. The event, sponsored by Napoleon Perdis, Toni & Guy Adelaide, and Smallacombe Real Estate amongst others, showcased a fashion parade of beauty and glamour against all odds.

Despite this I am extremely happy and am self-employed, have travelled the world and volunteer my time and services for a variety of local charities.

I thoroughly enjoy guest speaking and wish to share my story with others. My most notable speech was at a VIP event at the Entertainment Centre in front of the ex-Mayor of New York, Rudy Guiliani in 2003.

Lupus Intus (The wolf within)
Hyde Park Press (self published), Richmond, Adelaide, 2009

Suzanne Ferschl has experienced an unnaturally high number of obstacles blocking her life’s path for the past 25 years. Her story is so unbelievable many will consider it fictional, but it is a real story of heroism of the most basic kind. This is an informative and comprehensive account that is honest, soul bearing and bursting with raw emotion, highlighting the unpredictability and fragility of life. A positive story laced with humour and set to inspire, motivate and empower people from all backgrounds. If you need to overcome anything in your life, you’ll want to read Lupus Intus.

SA Writers’ Centre Inc

Legislation has been important for people with disabilities in achieving services and integration into the community. This was particularly so in the halcyon days of reform in the 70s and 80s. However, legislation played a role even in colonial times.

South Australia was the first State to legislate for associations to be able to incorporate, as early as 1858. This enabled parents, friends and supporters of different groups to form legal entities for fundraising and providing services.  In this way members were able to avoid personal liability for debts of the association. This early start helps to explain why so many NGOs have played such a crucial role in South Australia’s disability history and still provide services today.

South Australia’s first Mental Health Act was less commendable. The Lunatics Act of 1864 breezily dismisses distinctions between mental illness and intellectual disability in its key definition: “ lunatic” “shall mean and include every person of unsound mind and every person being an idiot .”
Things could only improve from this, although until the late 1970s, the emphasis in our mental health legislation was clearly on control, rather than individual rights. At the stroke of a pen, the superintendent of a mental health institution could place a person’s finances under the Public Trustee, or detain someone indefinitely. Appeals lay only to the Supreme Court.

It was the South Australian Mental Health Act 1977-79 that led Australia in its reforms, with the creation of the Guardianship Board among other things to ensure longterm restrictions on a person’s liberty and management of finances were subject to scrutiny and approval by a special multidisciplinary body.

As a lawyer in the Crown Solicitor’ Office and then as the first Chairman of the Guardianship Board, I was heavily involved in the implementation of this legislation. However, the architect of this farsighted legislation was the then Director of Mental Health, Dr Bill Dibden, who should not be forgotten for his contribution.

However, it was the Committee on Rights of Persons with Handicaps which was a turning point for persons with disabilities in terms of law reform. In 1976, the then Attorney-General Peter Duncan noticed a short article in The Bulletin on the UN Declarations of Rights of Disabled Persons and Mentally Retarded Persons. It gave him the idea of a review of  South Australian law and policy having regard to these Declarations. He asked Charles Bright, a Supreme Court judge and me to work together to set up the review.

Over the next 5 years, (life was so leisurely then) the Committee produced 2 major reports on physical and intellectual disability respectively, which led to many changes of benefit to people with disabilities, including:
•    Anti discrimination laws
•    Improved access laws
•    The parking permit scheme
•    Employment initiatives

One can see its influence in the Principles of Disability Services Acts and national standards for disability services.

Perhaps, its crucial contribution was its rights perspective – that people with disabilities should be part of the community as a right; they should be able to enter public buildings without access problems; they should not be discriminated against in employment when their disability does not affect their ability to do the job.

Until then, advocates for access improvements had always met arguments based on need and cost. How many people in wheelchairs will actually want to enter this building was a frequently asked question which proved an obstacle for change. Arguments based on right were much more difficult to dismiss.

Just as the Bright Committee was ending its work, it was 1981 and IYDP [the Year of Disabled Persons ] which continued the focus on disability issues. The responsible Minister was again the Attorney-General because of the rights focus, and now Trevor Griffin, who brought considerable commitment to the task.

The momentum continued with a review of services for people with intellectual disability, chaired by Dr Bill McCoy, supported by others, including a young psychologist, Peter Millier.

The same slipstream saw the creation of Link magazine by Jeff Heath, who along with others including Neil Lillecrapp collaborated to obtain Government support to establish DIRC. Jeff played a significant role in publicizing the need for change in a light, very effective way, not dissimilar to Nick Xenophon.

The other significant force for change was Richard Llewellyn, who through commitment and personality became the Disability Adviser to the Premier, and enhanced the impetus for change.

This was a most creative and enjoyable time for me, as the principal writer of the Bright Reports and in the implementation of the legislative changes which followed. In this, I had the support and friendship of many people who were seeking the same changes, including;
Sir Charles Bright
Janet Belchamber
Jeff Heath
Richard Llewelyn
Peter Millier
Neville Kennedy
Maurice Corcoran
Ian Shepherd
Barbara Garrett
Neil Lillecrapp
Rosemary Martin
Peter Duncan
Trevor Griffin

They were heady days . There was a great sense of being involved in something worthwhile together.

Ian Bidmeade AM
June 2009

Ian Bidmeade is a lawyer with expertise in the areas of disability and mental health. He was appointed a Member of the Order of Australia in 2008 for service to public health and to people with disabilities through contributions to administrative and legislation reforms, and to the community through a range of social welfare organisations. Ian is a Board Member of Disability Information and Resource Centre (DIRC).

It was 22nd October 1998; I had returned to work, had the day off & decided that I would go out fishing, with my father. Mum & Dad had a property about 14 km away, on the north coast, had it’s own boat launch area, & good fishing right out in front. Sharon wasn’t very keen for me to go out, even less, when I asked to use the Berlina, (Our new car, which she had been given control of). However she reluctantly agreed. So I set off for the day, had a good day’s fishing, & was retuning home, around 4pm. I had cricket practice to go to!

That’s when our lives changed forever! I had a serious accident on the way home. Trees don’t move for anyone!

Lucky for me an off duty ambulance officer was following, & managed to get me breathing, stopped a passing car & asked them to call into the next house, phone an ambulance & tell them the State Rescue Helicopter would be needed.

It was discovered later; I had sustained a brain injury & spent 12 wks in a coma. Months of care & frustration followed, for Sharon & my entire family. I spent a year at the Rotary building, Brain Injury part of Julia Farr (now Hampstead); to get me at my best, for me to return home.

Because of my brain injury, I have lost the use of my left side; have limited use of right arm & fingers; my sense of balance therefore I am confined to a wheelchair. However, I have learned since my accident, because I have seen far worse cases than mine, it’s far better to look at the things you have, rather than looking at what you have lost! I still have my brain; my wife & family; I can feed myself; can type slowly with my right hand (I use to be left handed).

But I think one thing I still have that is very important, my sense of humour!

I have written a book – U got to laugh!!, with help from Simon Kneebone & Sharon Menz (Sha). This was only created to have a laugh!

Carers are now required, not only in my life, but the entire family’s lives! They do an outstanding job (not highly paid either), for me, as with many people in similar situations. Life would be very hard for all of us, without their help!

They have a sense of humour, & believe me, often need one!