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.
– Excerpt from ‘#Hello, My Name is Emily Ong’
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.