Nothing About Us, Without Us: My journey as a dementia advocate
Congratulations to Emily Ong, a passionate advocate who has made prominence in the global dementia community. As one of the newly-elected members on Dementia Alliance International’s (DAI) Board of Directors, she shares how her advocacy started and her hopes to make an impact for those affected by the condition.
By Emily Ong, Dementia Advocate, and newly-elected member on DAI’s Board of Directors
I joined Dementia Alliance International (DAI) in August 2019 after I heard about Kate Swaffer from my discussion with Ruth Wong, ADA’s Voices for Hope Programme Manager. It is inspiring and motivating to know a global organisation meant for and run by people living with dementia. I would say that it is the best testimony of the ability and capacity of people living with dementia.
My first article contribution for the DAI blog was in conjunction with World Alzheimer’s Month #WAM2019. “#Hello, My name is Emily Ong” was published on Day 9 of Dementia Awareness Month/ World Alzheimer’s Month. It was a heroic act and marked the beginning of the first page of the first chapter of my journey as a dementia advocate.
Hello, my name is Emily Ong
June 2017 (the exact date I could not remember already) I had the scariest experience of my life when I asked myself – “What do I need to make French toast?” – when it has always been my family’s usual breakfast. All that I remembered was bread, and that the equipment I needed was a skillet.
I tried so hard to recall but NOTHING was retrieved.
Since then, my advocacy journey has been sailing wide and far with the support of Kate Swaffer, the co-founder, past Chair, and current CEO of DAI, who has been mentoring me all this time. To me, advocacy is using your story and lived experiences as a person living with an invisible disability that is highly stigmatised, discriminated against, and heavily patronised, to call for social change and action to make life better for people living with dementia.
I gave myself two years to grow as an advocate and sharpen my advocacy skills and knowledge. I started with my Facebook Page – Living with mild cognitive impairment & YOD, where I write about what life is like living with dementia, coping strategies, and share information on dementia. When ADA invited me to co-facilitate their step-up programme, Voices for Hope, I took it up and have since co-designed the content and co-facilitated four cohorts. To me, having a dementia advocate involved in the planning and facilitation of a programme is critical to achieving the programme’s goal of encouraging people living with and affected by dementia to step up. It is also about embracing an inclusive work culture within ADA to ‘walk the talk’ of including persons living with dementia in the workforce.
Over time with the support of Kate Swaffer and DY Surhaya, the Regional Director of Alzheimer’s Disease International (ADI) Asia Pacific Region, I began to step up my advocacy at the regional and global levels. I am involved in the World Health Organization’s Global Dementia Observatory Knowledge Exchange Focus Group, ADI Accreditation Global Review Panel, and was recently invited to be in the Scientific Programme Committee for the ADI 2022 Conference. Moreover, my exposure at the ADI 2020 Conference as a keynote speaker and delivering the opening speech on HOPE, has greatly shaped my advocacy path. I have become more knowledgeable about the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), accessibility, and environmental design’s impact on quality of life.
At the launch of the World Alzheimer Report 2020 on 21 September 2020, I was inspired by Kate Swaffer’s call for action from the rhetoric of dementia-enabling design to the implementation of environmental design. The opportunity came when Associate Professor Habib Chaudhury, a visiting professor at the National University of Singapore, attended one of the sessions of Voices for Hope. He was interested in sharing his expertise in environmental design in building dementia-enabling environments.
With his support, I started a small global group – Environment & Dementia: Special Interest Group (DE-SiG) – in May where professionals from multidisciplinary fields and people living with dementia come together to provide expert advice and inputs on working towards a dementia-enabling design in the community to improve the quality of life for everyone, not limited to people living with dementia. There is a need to look into how the environment, including the natural, built, and communal environment, can be designed to provide tranquility; minimise impairments impact, activity limitation, and participation restrictions from dementia; and can be intentionally created to reflect the shared values of a community.
With all these involvements and working with others at the international level, I am confident and ready to take on the role as a member of DAI’s Board of Directors. DAI is a global group of, by and for people living with dementia, providing a unified voice of strength, support, and advocacy on the rights and autonomy of people living with dementia. It started with 8 people from 3 countries (the US, Canada, and Australia), and now DAI represents members all over the world. My hope and plan as a member of the Board of Directors are two-fold:
To provide an Asian voice from the Asia Pacific region in DAI; to give the global organisation a better representation of the diverse cultural communities it represents. The needs and voices of the non-English speaking dementia communities are underrepresented at the global level. The DE-SiG initiative is an example of how DAI hopes to bring in more experts, particularly from the Asia Pacific region to discuss and find ways to create an enabling environment that is culturally appropriate and needs sensitive.
To grow the presence of DAI in the Asia Pacific region through a local cultural approach so that the support and resources of DAI can benefit a wider and more diverse range of global communities. The DAI SG peer-to-peer support (La Kopi, Lim Teh) is one such initiative where support is adapted to the local culture without compromising on the quality of the support rendered by DAI.
At DAI, we believe that by working together, we will identify concrete action for implementation with the international community, and in the process, ensure our human rights are being fully met. At the end of the day, we want people to know and recognise the importance of embracing “Nothing about us, without us” in initiatives intended for people living with dementia.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it is the only thing that ever does.” – Margaret Meade