In 2009, the Hon. Bill Shorten, now the Minister for the National Disability Insurance Scheme (NDIS) in Australia, gave a speech to the National Press Club. He ended his speech by defining the concept of “an ordinary life” in the Australian context. He said that “it is impossible to over-emphasise the need, the primal need, that people with disability feel, and it’s the need to be ordinary, to not be thought of as amusing, or pitiable, or brave, or admirable, or coping wonderfully with difficult circumstances. Just to be one of the gang, a girl in the office, a bloke at the pub, not invisible but unremarkable, part of the normal order of things, a friend like any other, a neighbour, an average Australian, a citizen, another human being.”
This is one of the most profound statements I have come across in my almost 50 year career of supporting people with disability. I am especially struck by the phrase “not invisible, but unremarkable.” People who live ordinary lives cannot be pointed out as being “different” in any way, they are, in Shorten’s words, part of the natural order of things, a friend like any other, a neighbour, an average Australian, a citizen, another human being.
Robert Edgerton wrote a book titled “The Cloak of Competence” in 1967 in which he talked with people affected by disabilities in California, and discovered that what they wanted more than anything else was to be, in Shorten’s words, not invisible but unremarkable. The same concept is woven throughout the book “Allies in Emancipation” by Patricia O’Brien and Martin Sullivan. People with disability do not want to be clients in a system that relies on behavioural deficits to fund services in a system that is top-heavy with administrators and compliance monitors.
In order to achieve this goal, people need to have a high quality of life, which is not measured in how many possessions one has, but rather in how many friends one has. Quality of life comes from having a life free of pain, it comes from being in relationships where you can give to others as well as receive from them. Having a safe place to live is critical to being unremarkable, as is having a vocation or avocation that is meaningful to you.
A high quality of life is supported by needs that are met. The Matrix of Needs provides the framework for identifying these needs and in turn supporting the creation of practical supports for each person to empower them to meet their own needs. The blog written 29 June, 2021 delves into this concept more deeply. As we go about the process of supporting people to live their best life, the words of Bill Shorten should stay in our ears and our hearts: the people we support are friends like any other person, a neighbour, an average Australian, a citizen, another human being.