Stacy Rheese is the Policy Manager at Advocacy for Inclusion, an ACT Disabled People’s Organisation which provides systemic, individual, and self-advocacy services for people with disabilities, as well as training, information and, resources.
The theme of this year’s International Day of Persons with Disabilities is ‘Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world.’
The experiences of people with disability are individual and diverse. But when it comes to leadership and participation, there can be similarities that resonate across the diversity of individual experiences of disability.
Throughout our lives, many people with disability encounter stigma and attitudes which put limits on our expectations and opportunities of leadership and participation. We are taught to be compliant, to either learn to fit in with others or to stay separate from them. We are taught that simply our presence, behaviour, or thoughts can unsettle or cause distress to others. We are told we must be patient and recognise the lack of understanding and experience of others.
There are low expectations and limitations put on our educational and employment attainment. If we can maintain a passing grade without being granted disability support, this is taken as evidence of there being no need for reasonable adjustments – why should we be given the opportunity to reach our full potential and achieve better results than peers who do not access support?
If we are able to gain employment, we should be grateful for the opportunity, and we can’t expect to progress to higher roles with inflexible requirements and greater responsibilities.
We are taught that many opportunities are out of reach, and to set ‘realistic’ and ‘achievable’ goals within the limited opportunities presented to us.
This messaging can be reinforced by a lack of representation, with few visible or recognised role models in our media and through the services we interact with. It can also be reinforced by our own internalised stigma, leading some of us to question whether we actually can achieve, whether we can meet those requirements, whether we are ‘able’, and to fear the potential ramifications of requesting reasonable adjustments or support.
Despite these limitations placed on our expectations of leadership and participation, I would contend that we are surrounded by examples of disability leadership, whether this is recognised or not.
Approximately one in six people in Australia have one or more disabilities. In many ways, the experience of disability itself can drive the development of leadership qualities. Existing in a world not designed for you strongly encourages the development of resilience and adaptability. People with disability live in a built environment not designed for us to move through it, in a collective social system which does not recognise our experience, and within a population who often rely on only one method of communication.
While being misunderstood and overlooked can provoke feelings of extreme frustration and futility, it also generates a remarkable ability for patience and strength. The need to be understood and participate also engenders talented and experienced educators, and creates passion and drive. These are recognised qualities of effective and powerful leadership.
But in a world which is not built for us, in the face of barriers of stigma and discrimination, displaying leadership becomes additionally challenging.
Due to many barriers to reaching positions of authority, unlike many recognised examples of leadership (such as decision makers, and those with a large public presence), disability leadership often appears from people who are not in positions of power. These are the unemployed who volunteer their time; the inpatient who requests access to an advocate; the employee who raises a discrimination complaint; the litigant who goes to court to legally fight to access disability supports; the social media posters who share their experiences and start conversations; the person who chooses what clothes they want to wear today.
So often disability leadership means to fight for rights and access, to break down barriers, to oppose the status quo, and to demand change simply in order to have our dignity and independence respected, to have access to the same services and experiences as others, and to uphold our human rights.
Too often, these examples are considered to be not socially acceptable, subversive, noncompliant, and troublemaking. We need to learn to recognise them for what they are: displays of resilience, drive, independence, and leadership in the face of resistance. We are clawing for progress because the rest of the world is not keeping up with us.
In many ways, COVID brought a great progression forwards for people with disability. The need to create opportunities for remote work and access options has seen technology and awareness gains which have improved accessibility enormously. With remote access, suddenly workplaces and services became more accessible to many people with disability than ever before. We have been given an opportunity to consider what is possible and to incorporate wide-scale adaptable and flexible approaches into our environments and structures like never before.
Yet I fear we are on the precipice of a giant step backwards in the rush to ‘return to normal’. When the majority of the population no longer have a need for these measures, will we forget what advances we have made, unlearn our recently developed skills, and will remote access become an ‘impossibility’ or an unreasonable request again? Will these measures even be recognised by the majority for what they did, in opening the door to previously inaccessible spaces? Or will they be dismissed completely as an inconvenience that many are glad to be rid of?
On this International Day of Persons with Disabilities, I want our community to take the opportunity to consider and recognise the diverse examples of disability leadership, and to recognise opportunities to respect and make space for disability leadership. Our leaders with disability are all around us. They have been created through their experiences, and tried and tested through their lives. Recognise them, respect them, and make space for them.
For information and support, contact (02) 6257 4005 or visit https://www.advocacyforinclusion.org.
