I became involved with PWdWA because of a concern about the number of people with an intellectual disability who were appearing in the Magistrates Court. PWdWA prepared a report which highlighted these problems.
Most people find it intimidating to appear in a Court for the first time no matter what their level of education. For someone with an intellectual disability it is all the more frightening. Often people with an intellectual disability try to disguise their disability because of how they have been treated by others in the past. If they do this in the Courts it can often result in an unfair outcome. Advocacy groups such as PWdWA are essential in ensuring that people with disabilities are treated justly. Although an organisation such as PWdWA cannot be expected to provide legal representation in the Courts it plays a vital role in ensuring that those in need of representation have the opportunity to obtain it.
Since becoming involved with PWdWA I have begun to better appreciate the many inequalities faced by people with disabilities of all types and how important it is for there to be an organisation that can both assist individuals with their particular problems and work towards achieving systemic change.
I am always impressed by the dedication of the staff and volunteers at PWdWA and I am pleased to continue my involvement with the organisation.
In 1996 I had one of the best working experiences of my life which got me up close and personal, although still at one remove, with the day to day realities of disability. I was asked to work with Rosalie Leaney, a nurse who had suffered a very severe stroke and as a result ended up paralysed down her left side, reliant on an electric wheelchair. Rosalie had written a manuscript about her life changing experiences and together we worked on it to hone it into a book, ultimately called Whose Hand is this? Rosalie’s entire life had been altered by the stroke and so was that of her husband Gordon, who gave up his job to care for her. I was constantly in awe of these two seemingly ordinary people who had to have so much energy and creativity just to reinvent ways for Rosalie to adjust to life in a very different body. It seemed to me that they, like many people with a disability, had to expend ten times the amount of effort on the most basic of tasks before they got to start their day, their job, or whatever chores were waiting, and that all of this remained entirely invisible. I could see with my own eyes what a difference accessibility and other disability friendly policies could make.
Around that time my brother-in-law was diagnosed with motor neurone disease. I saw a strong gutsy man lose control of most of his bodily functions and still keep his dignity and amazingly his sense of humour right to the end. (He was the one who put a sign on his door at the hospice saying Caution, Viagra testing in progress!) I also saw the emotional, physical and financial impact on my sister and her young family, of how government help could make or break them. In the midst of all the pain I saw what real courage is made of.
Being involved with PWdWA is like a touchstone to what is best in people. The staff remind me that you have to stand up for what you believe, whether or not that is an uncomfortable message for people to hear. And the members and clients, like Rosalie and Gordon, humble me with their quiet determination to problem solve and make things better for themselves and others in the same situation.
Recently I interviewed a wonderful woman with an acquired disability who said that she was initially and understandably depressed at her situation and could only see what she had lost, what she could not do. It was a slow painful journey to turn this around so that her first thought was instead What can I do? After that interview I went home and printed out that phrase and stuck it on my computer so that it might serve as a daily wake up call. I am really grateful for the chance to be associated with PWdWA which aims to change lives for the better. It reminds me of what is real and important’.