Disability Culture

by | May 29, 2020 | Culture, Disability, Health

Disability Positive – Language Matters.

It’s Time 4 Fun

The terminology we are using in today’s National Disability Insurance Scheme (NDIS) community, needs a new, positive and funky revival. The NDIS originally hailed as a lifeline for many disabled people, who were part of the lowest 10 % in the Disability population and who often missed out just about everything society had to offer. The United Nations gave Australia unflattering reports, for several years in a row, for their ongoing poor treatment of people with disabilities, and if you lived in Australia as a disabled person, life appeared grim.

People from the disability sector who were shut in Institutions were unable to access employment, education, the community and, more broadly were not able to live a life which was self-determined and self-actualising. I feel the underlining believe from providers at the time was, ‘disabled people were not interested in being self-determined or independent, so why bother. “No one cares…so why should you”. This was certainly the repeated message I got over my years working in the sector.

This, of course, was not what people with disabilities were saying, as their experiences were heavily documented and recorded. The ‘us and them” mentality never took with me as I am a person with disabilities working in this sector. It is different because I don’t see myself removed from the community, I am working in.

It is clear from pre-NDIS days, the terms “Choice and Control”, “Building Capacity”, “Reasonable and Necessary” “Assumed Capacity” and “Ordinary Life” was not part of the disability community’s conversation. But today in the workforce we talk about this like it actually means something. Language is important because language can inspire action and reaction, so how we talk about this matter.  These concepts are obvious, and it is clear the Legislation was not written for the purpose of reflecting a disability community, but for modernising a workplace which was failing to change and failing to address some very basic human rights and meet some very basic needs.

I question why this should have been legislated because these were already enshrined in fundamental human rights which people with disabilities should have experienced as natural laws and fundamental to their personhood. When people in the NDIS sector now talk about these concepts it is just indicated to me how far away from human rights people with disability are in Australia that we had to find a way to formalised these concepts and embed this into a framework such as legislation to help people who are working with people disabilities understand their rights, the purpose of life and the role this has when supporting people with disabilities.

Sadly, for me, this is not a sign of progress.

We need a new way of talking about these concepts that move us from an outdated boomer model to new and exciting millennium phase. For pushing the expectations forward in terms of opportunities and practice. My hope is for people to be prideful about disability and become champions of a funding model which is flexible, thoughtful, compassionate, market-driven with a dash excitement about the future. Let’s break from old conventional and conservative thinking which serves to keep people inboxes. I want to be part of a design which is exciting and innovative.

With some help from my friends on The NDIS Community Facebook Page, I asked this community to turn these boring old outdated terminologies and concepts into something much more reflective of how people want to be represented.

This is what we came up with.

  • Ordinary Life.. well, this is super boring, right?  We came up with: To lead the life destined to live or even just as simple a Happy Life. So much better, right? 
  • Instead of Reasonable and Necessary becomes Funding for Needs, which is really just how it sounds. The funds are there to supply what people need which helps to achieve their happiness and dreams.
  • Choice and control changes and becomes Dreaming my way to Goals. I especially like this one.
  • Building Capacity becomes Believing, Skilling and Achieving.
  • Assumed Capacity becomes Expected Human Approaches. This one is especially important as it takes the focus off the person with the disability and to the person providing support. The service use holds some responsibilities here and they have to get it right in terms of know when to stand up and knowing when to sit down. 

This changes everything. It changes who these concepts of people’s lives are put together in a framework. Positive thinking through to achieving practical results.

Lastly, a new and emerging concept which I feel is important for anyone deciding to work with people with disabilities. If people are not coming to the passion for the sector, it’s people and for looking for which acts build collaboration and kindness, then I ask you – have you considered a job in Banking or IT?

Let us reflect on disability culture in the way which represents a broad range of lives. It’s not just about living ordinary lives but taking pride in the extraordinary lives we are living. The old script we are using is out of date and let’s face if you haven’t understood the social disability framework by now, you’re too late this is changing and the new wave of disability culture is being created.

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