Words, ideals and optimisation are one thing, the reality of being a blind and deaf tetraplegic with arthritis is quite another. Throw cultural expectations and personal authenticity into the mix, and is the outcome a dignified one?
Each of us needs a Sense of Place, an awareness and acceptance in our spirit of who we are and our place in the world around us. Regardless of our circumstances or limitations, ‘I am’ and ‘I need’ are the two most fundamental requirements for life and any degree of enjoyment of it. I met a guy once who had raced motorcycles, with all the joy of life and appreciation of risk and reward that went with it. He’d had an accident which had left him with limited capacity to communicate and participate, yet he still had the memories of power, speed, skill and daring of former days. He was angry, and that is not hard to understand. Eventually he would need to resolve his anger and learn to see his new circumstances as both challenge and opportunity before he can fully participate. Until then he had some work to do, both for himself and for those around him.
Rachel Callander – artist, patient experience advocate and international speaker – speaks of language that addresses our fundamental humanity, identity and dignity, particularly amongst health professionals. Under the heading of ‘Life, Love and Awesomeness: The Impact and Implications of Language’, she speaks of how different communication styles affect patients, caregivers and the relevant professionals in their efforts to collaborate. Founded on her experience as mother to Evie – a daughter with chromosomal abnormalities – and their experience of the health professionals they were regularly involved with, she speaks of Evie’s uniqueness and legacy and the inspiration behind the Superpower Baby Project books. The jargon of health saw Evie as deficient, whereas the language of Callander’s ‘Life, Love and Awesomeness’ see’s her as human, expressing life not only from a different perspective, but from one that made a vital and valid contribution of hope and meaning to parents struggling with children in similar circumstances. This shift from liability to participant reinforces the essentialness of inclusion regardless of preconception or assumption.
Life is sensory, relying on our core abilities to both experience and respond to our immediate environment. This reliance however assumes full use of our senses, particularly in planning and the relationships between spaces, services and specific destinations. The need to get out of the car and go to the bathroom to freshen up after a trip is a given – provided you are independent and capable. But such an assumption is not universal, neither is its implementation. By extension then, it discriminates between the capable and the reliant, which brings us to the core of universal design. Because sooner or later the capable become the reliant, the reliant become dehumanised, and our identity and dignity are compromised. Our Sense of Place has been undermined and reduced by the decisions of designers who simply are not aware. Their ignorance drives a wedge between capability and reliance, between perception and assumption, and ultimately between our identity and our dignity.
Any intrusion or impedance is discriminatory and has an impact on Callander’s humanity, identity and dignity. Cultural expectations and the extent of injury or the impact of chromosomal abnormalities, reinforce rather than reduce the Sense of Place and the need to support any underlying preferences. Indeed it becomes more important than ever to maintain identity and cultural links. Examples are the desire to sit on the floor and look out the window which requires low cills, and communal dining which requires a distinct flow as courses are prepared and people are served. Preparation including being able to set a course to one side until it is required, the stacking of dishes as one course ends and another begins, and the preparation area itself all need to be taken into account. To trivialise this is to compromise and reduce dignity.
Universal Design centres around the core of our individuality, the right to Callander’s humanity, identity and dignity, and the responsibility of designers to our individual Sense of Place. Design has its place as an innovator, but it must be an innovation that speaks to core values and not to ego-driven aesthetic. The designer is a collaborator, not a manipulator, responding with solutions that offer universal life rather than adherence to perceived rights that often limit long-term inclusion. Universal Design implies universal participation, authenticity and the Sense of Place that is vital to our core humanity. Universal Design assumes Callander’s humanity, identity and dignity.