Today I am grieving the loss of a great Australian. Many of us are. It was with great sadness that I heard of the unexpected death of Stella Young. In a tribute piece published today, Stella’s friend and one of my favourite writers, Clementine Ford said with perfect eloquence “she spearheaded a conversation in this country about the dignity and autonomy of disabled people, whom she always maintained were truly disadvantaged not by their bodies or conditions but by a society which insisted on marginalising them.”

I kind of knew Stella in high school. I spent some time at Stawell Secondary College while she was there. I was a few years behind Stella, but I saw her around, and chatted to her a few times. I was mostly too scared to say much, I’d gone through some tough times and was pretty reserved during that time of my life. But she stood out from the crowd, with a personality that demanded to be noticed. We had friends in common. I was very glad to see her rise in prominence for her opinion, comedy and advocacy. I think she was Stawell’s greatest daughter. In 2012, when I first got sick, I wanted to tell her what her advocacy meant to me. So I wrote her a letter. Today, I find myself wanting to share that letter with you all.

19 May 2012

Dear Stella,

I have always been in favour of a National Disability Insurance Scheme. But recently, I have gained a new insight into its importance.

As a child, I always had people around me with some kind of disability. The family I grew up with included a young boy with Down syndrome, my primary school was fully integrated and my Girl Guide unit included young people with disabilities. In primary school, I grew up with friends who were deaf, had learning disabilities, and one who was in a wheel chair. I knew and loved them for who they were, and (within the bounds of my young but curious understanding) always tried to be supportive and understanding of their needs and aspirations. When I moved away from Melbourne in my mid teens, I spent six months at school in country Victoria. In Stawell, along with the rest of the community, I was struck by your determination, positivity and productivity in any endeavour you undertook. I have been joyed to see you clearly articulate issues around disability rights and the NDIS in the national media.

Recently, I began suffering neurological symptoms that have been very frightening. The first of these came on very suddenly and left me totally immobile. I was struggling to maintain consciousness and communication was very difficult. Admitted to hospital, I was glad to see my immobility begin to leave, but weakness in my legs remained. This has continued to occur to me intermittently. It is not only a terrifying experience, to become so vulnerable, but I also struggled a great deal with my own dignity. I remember struggling with a bed pan two times in one night, till the nurses said they would put a catheter in me. I was so angry and frustrated, thinking I would soon improve, and be able to use the toilet, if I only I were given the chance. Eventually, I got the hang of it. But found the whole experience terribly undignified, being left alone with urine all over my butt cheeks. I recognise and understand the amount of work a nurse has to do, and mean to pass no judgement there, but mean to merely articulate the importance of supporting those less able in the most dignified manner possible. On one occasion I was able to inform the nurse that I was losing the ability to move and was then left totally alone for three hours with no one to even check if I had choked on my tongue, let alone offer a simple reassurance of another’s company. I was once told to simply walk down the hallway to the nurses station. On another occasion, I was told to swallow my pills, despite the fact that I wasn’t able to move. I remember being stranded in the toilet, with nothing but the smell of my own faeces for 20 minutes awaiting help to get up, flush, and return to my bed. Or having a nurse call a wardsman to help me to the toilet, despite the fact that I needed help pulling my underpants down.

Put simply, while I have always understood the truly basic notion of the dignity of people with a disability, and have supported dignified constructive and tailored support for people with disabilities, I have a new found appreciation. I want to thank you for your longstanding contributions to advocacy and support for young people and people with disabilities. I look forward to those moments when such work pays off.

Thank you kindly.

Sincerely

Susan