Project Citizenship is a pioneering initiative that aims at helping people with disabilities be seen and included in our communities as full contributing citizens.
The way the project has been leading positive social change is through documenting inspiring stories in film, photographs and other art forms depicting people with disabilities making our communities better places. The stories themselves are powerful change agents that challenge negative stereotypes and we hope inspire people to take action to include people with disabilities in all aspects of community life.
View some of their awesome stories on the University of Alberta website and on the Project Citizenship website.
I have been invited to submit short 'creative' essays to the IRISS project (www.iriss.org.uk/project/creative-quarter). Below are my first essays for 2014.
1. Choice and control for people with disabilities (March)
In my daily work, I research new models to support disabled people. I am passionate about the move towards choice and control for people with disabilities.
Our experience of transitioning from traditional service-based philosophies clarifies the fact that no single approach fits all needs. These transitions therefore are opening the potential for novel ideas to achieve better outcomes for the people we serve. In fact social innovation is not necessarily about devising groundbreaking ideas but often about applying old ideas to new issues. Where I want to practice my imagination is in thinking about how to apply personalisation with creative approaches to delivery and support.
At the core of personalisation is the person making decisions about what a good life is for them - about their goals. This idea seemed disarmingly simple when I first heard it. It also reminded of the excitement that fuels liberation movements throughout the ages.
The practice of it, however, uncovers multiple layers of complexity. Speaking daily with people who previously had varying decision power over their own lives, I see in action how challenging this step of the model may be. Articulating life goals… how many of us actually did it?
People living with disabilities may need coaching and encouragement to dream big… As an example, the other day I was talking to a middle-aged man who has high physical needs and significant mobility challenges. He spoke of how difficult it has been for him to find people to assist him with either models of care. “I do not dare dreaming about what is possible beyond my daily personal care.” He is still traumatized by past negative experiences and took a long time to unravel secret dreams of pursuing studies in Education.
When it comes to articulating dreams, the essence of what we are aiming for may lie in the minute details of personal interaction … I am by no means saying it is impossible. My point is rather that we need to be aware of potential threats to the success of new approaches. We also need to make sure that people are not rushed towards simplistic goals and solutions and that they have skilled coaches to guide them through. Once we have started on this path, though, and people have shaped some starting ideas, individualised funding models provide us with the means to implement creatively.
Whichever way we look at it and reshuffle the elements that make up good care, it’s going to be about people working with people.
I am interested in meeting others interested in applying creativity in transitioning to choice and control. Sharing stories about unusual ways to overcome obstacles by thinking outside the box is essential. Outstanding examples have the power to open up new possibilities and inspire young dreams… Let’s do this together - one piece of the puzzle at a time!
2. Boosting peer support through the use of technology (April)
Peer support for clients and families of the disability sector is of paramount importance because it has the potential to hasten clients’ outcomes achievement. This is however a complex issue because of the highly specific nature of the help that each person needs.
I tackle this challenge with two ideas - peers and technology.
The idea is to orchestrate the meeting of people and knowledge via a multimedia peer-learning system accessible online and via mobile devices, thus distributing the right learning experience for the right audience, at the right time.
We harness an age-old idea: enrol people with lived experience to help newcomers into the system. Peer support stories carry much more than information:
They carry: Information + Relevant Experience = Tacit Knowledge.
Targeted peer stories have the potential to accelerate the adoption of patterns and choices that will first benefit their mentees – and ultimately the system as a whole! Engaging the help of early adopters as champions provides them with a great opportunity to contribute on two levels: micro and macro. Helping a peer achieve great outcomes is very satisfying and could event strengthen the mentor’s own decision-making ability. Additionally, and this is less frequently mentioned, those peer-supporters who volunteer will benefit from contributing to the greater good, by giving back to the system that has helped them originally.
The new experts
Traditionally health systems viewed professional staff as the experts, entrusting them with all powers. Face-to-face encounters between clients and professionals have been the prime method to transfer relevant information. We have to let go of these past information transfer patterns, however, because our health systems face staff constriction rather than growth.
In the context of making decisions to orchestrate a Good Life for the disabled person, this balance of power is changing, however, with the recognition that the person with the disability and their family/allies know what is best for them. If so, a peer disabled person or peer family member gains the status of a more appropriate expert than a professional. All parties involved should welcome such a shift – that will free up time and energy for professional staff to focus on other parts of the system where their input is crucial. As a bonus, an extended audience of professionals and policy makers accessing the stories will have direct access to the voices of the consumers of the sector.
Research repeatedly shows that clients of the disability sector need more information... but in fact there is an information glut. What these clients need is tacit knowledge (targeted information with added value). Whilst governments hold the responsibility to provide basic information, the exchange of knowledge and experience via peers can be done through stories. Stories carry Tacit Knowledge, because their nucleus is a prime vehicle for a learning point... Our next challenge is to design systems and distribution channels to make them accessible for clients, parents and families.
Bio: I have practised as a Clinical Psychologist and Family Therapist since 1985 and was awarded a PhD in Leadership Narrative Storytelling in 2005 (University of Waikato, NZ). As the New Zealand Leadership Institute Inaugural Research Director I was invited to Washington D.C. by the Gallup Leadership Institute to receive a Gallup Positive Psychology Award for my work on Formative Experiences and to represent New Zealand at the European Association of Service Providers to the Disability sector. I have lived experience parenting a talented differently-abled artist who inspires me to coach people tell their amazing stories.
I have authored over 50 peer-reviewed publications including for the UNESCO and the Human Rights Commission about the use of technology and storytelling to develop leadership. My Knowledge Translation research is about how working with consumers to capture and disseminate stories of consumers and build capacity in the disability sector.