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The principle of 'nothing about is without us' resonated deeply throughout my travels, emerging as a critical theme in the pursuit of true inclusive wellbeing for disabled individuals. It encapsulates the idea that policies, programmes, and decisions affecting disabled people must be made with their active involvement and input. Time and time again, I encountered examples where this principle was ignored, and the impact was profound. Wellbeing for people with disabilities is improved when they are actively involved in decisions that affect their own lives, both on a personal level and in policy-making.
Including disabled people in decisions that affect their lives needs to go beyond mere participation, it must encompass genuine partnership, collaboration and empowerment. However, I was reminded by Dr Annmaree, a researcher from Sydney University, that “intention doesn’t always lead to action”. Therefore, for any policy to be fit for purpose, the voices and opinions of the people affected by it must be reflected in any eventual policy, programmes and projects. It is not just a matter of listening with no action.
As has frequently happened in the UK, policies have been implemented in New Zealand without sufficient input from those directly impacted leading to inadequate solutions.
However, EGL took a different approach by including disabled people when designing their initiative. This is a crucial, fundamental part of the EGL approach; that it was created in collaboration with, not for, the disabled community themselves, with their voices and experiences at the heart of the design process.
Hundreds of disabled people and their families contributed to the development of the EGL approach directly and indirectly. This has led to a system that is more responsive to the actual, genuine needs of disabled people, rather than one based on assumptions and guesswork of what those needs might be.
It needs to be implemented not just suggested, it needs to be actioned not just listened to. It needs to happen.
This was further highlighted during my time at Sydney University where researchers shed light on the fact that existing data often falls short in providing a comprehensive picture of disability because “many surveys and data collection methods are inaccessible or include inadequately designed questions”.
This can have a huge impact. The absence of accurate, inclusive data with no meaningful input from those directly impacted, means that the specific challenges and barriers faced by disabled individuals are often overlooked, resulting in inadequate resources, services and opportunities for people with disabilities, affecting their wellbeing.
“Acknowledging and dismantling barriers for research participation ensuring that those referred to as ‘hard to reach’ requires reflective practices in research design to consider both the population of participants as well as the accessibility of research tools utilised to collect data.”
Every step of the way disability needs to be considered and the only way to truly do this is to speak to those with lived experience. You only get a true understanding when you speak to those who are most excluded. Assumptions are often made and the lack of autonomy is overwhelming.
It is crucial to ensure that data collection from disabled people about issues affecting their lives is conducted in an accessible way. Questions and formats must be inclusive, otherwise disabled individuals risk being excluded from the data. This exclusion can lead to inaccurate information, resulting in services that fail to meet their needs and ultimately impacting their wellbeing.
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