Bertram and Bruce
Bertram was living in a nursing home, isolated and without anyone in his life other than paid staff. Bertram was a quiet, delightful gentleman in his early 60s when we met him. He had a mild intellectual disability, was shy, and hesitant to respond to anyone he did not know. Therefore, his life was confined to primarily his room in the nursing home, and to the ever-changing paid staff.
Whenever he left his room, Bertram would take his worldly possessions in one small school-size case. One wonders at the need to keep secure, all he owned.
Staff of the Citizen Advocacy office met with Bertram several times to determine his overriding needs, in preparation for the recruitment of a suitable citizen advocate to respond accordingly.
Bruce was a person known to one staff member for many years through church. He was a man of good character and principle and, as the managing director of a national printing company, was able to communicate skilfully. These were the attributes required to respond to the identified needs in Bertram’s life.
Bruce’s friendly and gentle ways gradually won the friendship and trust of Bertram and occasionally they would go out for a coffee – Bertram always taking his case of possessions.
Bruce’s skill of negotiation and importance in Bertram’s life, soon won recognition by the Nursing Home staff where Bertram lived. This was a very important aspect given Bertram’s declining health and isolation.
Each time Bertram was sent to hospital by ambulance, the staff would advise Bruce, who would leave his office and be at the hospital in time for Bertram’s arrival. On one particular occasion, Bruce overheard derogatory comments about the worth of treating Bertram. Bruce cornered the medical staff and stated ‘that this gentleman was to receive the same treatment as if he was their father’. Bertram recovered and returned to the nursing home.
Bruce saved and changed Bertram’s life. Bertram had a friend and confidante in Bruce who safeguarded his interests, and was not paid to do so. Bruce ensured his Will was in order and upon his death in his room at the nursing home, Bruce arranged, and attended his funeral.
Written by the co-ordinator of the Citizen Advocacy Eastern Suburbs office prior to its funding being withdrawn by the Federal Government in 2004.
Ken and Joanne
Ken was a man with intellectual disability and a long complex story of rejection, aggression and illness. Ken was caring for his mother who was very ill and dependent on him for her total care and the running of their household. No service worker would help them because of the substandard conditions of their home.
Since Ken’s mother depended on him, she maintained control over him by controlling his money, cigarettes and his medications. When Ken became frustrated and angry, she punished him by depriving him of medication and called the police to have him locked away for a time, so that he knew who he had to obey.
A Citizen Advocacy Programme “matched” Ken with Joanne. From the first meeting she felt drawn to look out for and protect him. Ken often decided he did not want any help, but Joanne persevered. About 12 months later his mother passed away. Joanne managed to get the tenancy agreement transferred to Ken, providing long term security and safe accommodation. Ken had undiagnosed and untreated medical conditions, including bad teeth and feet. Slowly and surely Joanne saw to it that his needs for proper medical care and attention were met.
Initially it was difficult for Ken to live alone. Much of his life had been spent in and out of institutions, boarding houses and caravan parks. As Ken’s citizen advocate, Joanne helped him to build and sustain connections with his neighbours and the wider community and realize his dreams to live his own life and have friends.
Their relationship lasted for eleven years, until Ken died unexpectedly one night in his own home. He died finally knowing what it was to be loved, valued and respected. His loss to everyone was enormous.
Maggie and Ronda
While driving home after a long working week my tired mind began tuning in to snippets of a dialogue on the car radio. The phrases I heard intrigued me: “being a loyal and accountable advocate and promoting, protecting, defending the rights and interests of people who have intellectual disability.” My ears pricked up with curiosity.
The speaker was Bob Lee, Coordinator of Sunshine Coast Citizen Advocacy. What I heard about in that radio discussion was the respectful nature of a mutual relationship that could develop over time, empowering both parties.
I contacted Bob Lee and we had a lively discussion on the principles of advocacy. He explained the goals of Citizen Advocacy: to take actions which result in a better life for the person with a disability, to give them a fair go and to be treated with respect as valued members of our community.
I signed up.
During advocacy orientation l learnt that having an advocate could position a person with disability in a place of equal status with the other parties involved in their lives, such as their service provider or the Department of Disability Services. It is the task of the advocate to vigorously represent the interests of the person with disability to those third parties. People with intellectual disability and limited informal networks may need an advocate to act on their behalf due to their weakened ability to represent themselves to other parties, who may have no understanding of the person’s needs or wishes.
Citizen advocacy could involve representing a person’s best interest in making formal appeals, for example, to a medical specialist, a housing department or a service provider. When a person’s life decisions are in the control of third parties, he or she is susceptible to things going very wrong. An independent, unpaid advocate who has no divided loyalty or conflict of interest can act on their behalf during a crisis when uninformed decisions are being made that may have a detrimental effect on the person’s life.
By having a deep awareness of the nature of the person’s vulnerability, an advocate can also act in advance to prevent crises from arising. An advocate commits to a long term relationship with their charge which enhances trust.
I was matched with Maggie in November 2009 and from our first meeting we just seemed to click. Although Maggie is unable to speak she can make herself understood through gestures and facial expressions indicating a yes or no response. I was immediately aware of her strong sense of self and her desire to be in charge of her own life. We started getting to know each other through weekly visits to her house for a cuppa.
There was little information about Maggie other than that she had been in an institution overseas as a child and was informally adopted by a person who brought her to Australia. On that person’s death, Maggie was vulnerable, alone with no support and had no voice to represent herself. We talked over what we came to call “me being her person in her corner” and we began building a connection and a loyal friendship.
During visits I began to gain some insight into what Maggie was up against. I realised I had never had to deal with the kinds of things she had to deal with on a day to day basis. It wasn’t just a matter of poor treatment and lack of choice. I saw that she was never going to get to experience the things I got to experience. I decided I would need to stay involved over a long time, taking action to ensure things did not go wrong for her.
Maggie had some urgent and practical needs which I talked over with her. I had observed that she had difficulty swallowing and drinking liquids and was at risk of choking. I bought her a container of thickener for liquids and asked workers to cut up her food into smaller portions. Eating and drinking was then safe and more pleasurable. Even seemingly small changes can result in a much safer and better life; I made a simple book of photos showing options of food and activities and she demonstrated her ability to make choices to her support workers. She began to vocalise loudly when workers did not use her book and allow her to choose. Maggie had found her voice and decisions would no longer be made without her regard.
Our relationship grew into a mutual friendship. We often went out together for coffee and lunch. Maggie made it clear that she enjoyed my company and welcomed my friendship and support. She also made it clear that what I enjoyed doing was a bit tame for her and it wasn’t long before she began requesting we do more interesting things together. While on a riverside picnic she saw a jet ski and requested a turn and then another and another. I have come to know her as a person who loves the feel of speed and enjoys risk-taking sports. Instead of the craft-based activities she had been doing for years Maggie now goes swimming, surfing, wheelchair-dancing and sailing instead.
With my support Maggie lodged a complaint against a service provider and was able to select a provider more suited to her needs. As time went on we dealt with her protracted tenancy matters and had funds released for her to go on holidays.
Over the period of six years that I have known Maggie, I have become more able to predict the unique and special features of her needs and Maggie has built her trust in me. Our long term advocacy relationship and friendship became a bridge from the devalued world into the valued world. As our relationship developed, it was natural that Maggie’s circle would grow as my family and friends got to know her. Maggie began to flourish. She started using an IPAD to communicate and has her own Facebook page. Together we worked out a plan to start addressing her desire for a relationship. She bravely invited a male friend out on a date to the movies and they are now enjoying each other’s company on romantic dates as partners.
Being wanted, needed and loved was something Maggie yearned for. As an adopted person who was unable to tell her story she longed to belong somewhere and to someone, as she once had in her childhood. Her cultural heritage had been lost to her long ago when she came to Australia and yet she remained emotionally connected to New Zealand through music.
On April 19th 2014 I was granted legal guardianship of Maggie and we celebrated with friends over a glass of champagne. Guardianship allowed us to explore further dimensions of Maggie’s life without requiring the consent of a third party. I sent out certified copies of the guardianship order to a variety of government agencies requesting any documentation of Maggie’s background and arrival in Australia.
Maggie had told me she could remember her family of origin and yet there was no paper trail of her heritage. A chance comment led me to a copy of an extract of entry for her birth. It showed that her family surname was not registered at her birth; however, it did contain the name of both of her parents. An internet search led to a descendant’s page and contact with Maggie’s ten siblings was made. Unfortunately both of her parents had passed away but her siblings were overjoyed to be reconnected with their sister who had been taken from them 38 years before. Maggie always knew who she was and who she belonged to. She had waited patiently for me to find out.
Recently Maggie and I flew home to her family reunion which was full of tears and joy. Maggie is now making arrangements to live near her family permanently. She is taking legal action to have her family of origin surname recognised as her legal surname. At last she has family photos to put on her wall, sisters and brothers to SKYPE with and family plans to make. I look forward to relinquishing my guardianship to one of her sisters.
When Maggie no longer needs me to be her advocate I will have an enduring role in Maggie’s life as her friend. I see her as a gifted and unique person of extraordinary strength. I have gained much from our friendship and our relationship will continue to be reciprocal. I have grown as much as she has or perhaps even more by knowing her. She and Citizen Advocacy have taught me what’s important in life. Who else gets the opportunity to do what she allowed me to do? I was not just a trusted friend; I got to act as a moral activist on her behalf.
By Ronda Poulton (reprinted with permission of all parties, from Crucial Times Number 49, August 2015. www.cru.org.au).
Neville and David
The titles of these two Gouache and Oil Pastels Prints, by Emirates Professor David Allbrook, represent the changing nature of a citizen advocacy relationship. David was a citizen advocate for Neville through the Citizen Advocacy Eastern Suburbs office in Perth, WA, from 2000 to 2014.
David was born in London on 4 September 1923. He was an academic, anatomist, general practitioner, hospital administrator and palliative care specialist, with interests in archaeology and contributions to Amnesty International.
STS Leeuwin – ‘Race in Stormy Weather’
He held medical positions at Makerere University College, Kampala, Uganda, Washington University, St Louis, USA, University of East Africa, University of Western Australia, and at Calvary Mater Hospital at Newcastle.
After retirement, David filled his spare time as a hospital chaplain, and attending art classes and painting.
He was a man of compassion, energy and character, and had the capacity to make friends wherever he went, regardless of who they were or what they were doing
The citizen advocacy office staff met Neville in Prison, in 2000. When we were introduced to Neville, he approached us with his head down, shuffling, and would not look at us for the 10 to 15 minutes of our time with him. We met Neville several times, and this did not change. A large percentage of Neville’s body had been badly burnt and scarred and he would only shower when there was no-one around. He would not communicate with anyone and was very alone and isolated. He was about to be released from prison, but the supervisor would not permit this until we had found Neville a citizen advocate.
We had known David Allbrook for some time, having been introduced to him by a relative of mine, who was also a doctor. David listened intently to the life of Neville as it had been, and how it currently was, affected adversely by his past. Not surprisingly, David wanted to become Neville’s citizen advocate and contribute to his life.
David met Neville in prison several times and was involved in his release and accommodation for his future. David met with Neville and staff of his new home, many times over the following months and years and was instrumental in David being employed in a workshop, and many other significant areas of Neville’s life. Gradually, over the years, the change in Neville was astounding. He went from being a shy, reticent person who would not look anyone in the eye, to a happy, outgoing individual who wore brightly coloured clothing and was involved in almost all he could be. The staff at Neville’s home was amazed at the change and were pleased to consult David regarding all aspects of his life.
David remained actively involved, and made a significant contribution to the well-being of Neville right up until his health began to decline. David passed away on 1 August 2016, at the age of 93. Neville’s life had held very little, prior to David’s involvement: an involvement that was to last 14 years.
Miriam Perkins – Former co-ordinastor
STS Leeuwin – ‘ Full Sail In A Good Breeze’