Showcasing the Dignity Project for Citizen Science month

We're celebrating Citizen Science Month in April.

The Dignity Project has been featured in the Cheif Scientist 'Citizen Science Campaign', showcasing the faces of Queensland’s citizen scientists.

Read the full article here.

Learn more about the Dignity Project Community Hub moderator, Joe-Anne Kek-Pamenter:
I am 48 years old and grew up in Dubbo, country NSW. I relocated to the Gold Coast in 1997 to further my career and open up new opportunities. I lost part of my hearing at age 16 from an adverse reaction to a vaccine. With this in mind, moving to the Gold Coast had the added benefit of working for larger organisations and meeting people on a similar path – it also meant I was able to further my education at a university level. Through my lived experience, I have developed a keen interest in working towards improving the lives of those with disabilities through education, inclusiveness, accessibility, dignity and advocating for equal opportunities. I also make time for my hobbies of calligraphy and keep fit with Muay Thai, attending training several times a week.

What citizen science activities do you do?
I work with The Hopkins Centre, as Citizen Scientist and Community Hub Manager for The Dignity Project. The Dignity Project is a community building agenda aimed at disrupting stereotypes and breaking through barriers that people with disabilities experience every day.

As the Community Hub Manager for The Dignity Project, I am working with researchers and citizen scientists to help uncover the meaning of dignity for people with disability. My role involves speaking to people with a wide variety of disability, who are happy to share their stories, with the view to uncover the past and reveal future possibilities for preserving dignity for all people. We have weekly articles in our Moderator’s Corner, which is a blog style space that highlights issues that affect dignity. These stories so far have been incredibly powerful and also highlights that many people with disability face the same issues. The platform also has forums where people can collaborate and have their say, in addition to regular surveys which aim to gather research data, which will be used to help bring about change to policy in the future. The project is currently working on research outputs, focused on making people’s experiences more accessible, being part of a larger movement for open access and open research for all, as well as having a clear research message to those that want to be involved.

What is the best thing about being involved in the project?
Being a citizen scientist has enabled me to explore many questions I had about my own lived experience and share those with others who also experience disability or impairment and have their own experiences. The sense of not being alone anymore on my journey and instead having a large network with which to discuss and share collaborative experiences has been important on many fronts. The Dignity Project is on the cutting-edge intersection between human experience of disability and science. In this regard, I have valued being able to connect with people with lived experience as well as experts who work in the disability sphere. I feel very privileged to be part of a future solution that creates meaningful change and equality for all people – and that is very exciting to me.

Why should more people get involved in citizen science?
Citizen science is very exciting and rewarding, in that it works to identify the challenges and struggles that many people with disability experience. It involves citizens, practitioners and professionals working at the coalface – who, themselves, have lived experience of disability – coming together to participate in a range of activities such as research, writing and co-designing. The disability rights movement term ‘Nothing about us without us!’ defines this philosophy and is based on the conviction that people with disability and lived experience know what is best for them (Charlton, 2000).

Anything else you’d like to mention about science or protecting the planet.
I am interested in hearing from anyone who experiences disability and would like to share their story or join The Dignity Project, Community Hub. Alone we can’t make much of a difference to our own story, but together we can write a whole new chapter.

Reference
Charlton, J. (1998). Nothing About Us Without Us. In Nothing About Us Without Us: Disability Oppression and Empowerment (pp. 3–18). University of California Press. Retrieved September 28, 2020, from http://www.jstor.org/stable/10.1525/j.ctt1pnqn9.6

Citizen Science details:
Contribute to science in person or online and discover a project that interests you this month: https://lnkd.in/eAziZPT
Find out about Global Citizen Science Month: https://lnkd.in/eM4msjc