As a full-time care partner to my 88-year-old mother living with dementia, I have a front-row seat to how a person with dementia lives with the progressive loss of cognitive, social, and physical skills. I too live the daily challenges, frustrations, and stigma that are the realities of people with disabilities, both visible and hidden.
Malaysia recognizes dementia as a disability under the Persons with Disability 2008 Act and the Convention on the Rights of People with Disabilities. But these lag the required legislation, policies, and systemic changes that are key to achieving an inclusive society. While every Malaysian aspires to enjoy their rights and live in dignity, we unfortunately have a long way to go to reach this utopia.
Meanwhile, my greatest hope lies in the perseverance and resiliency of persons with disabilities and care partners. And the simple acts of kindness of everyday people transcending religion, race, and socioeconomic status. I honour these examples:
— my mother’s determination and toughness, from whom I draw inspiration. At 88 years old, she lives life to the fullest despite living with co-morbidities, including dementia;
— the family care partners who relentlessly serve their loved ones at the expense of their health and well-being but find the courage and meaning to continue with their roles;
— the numerous persons with disabilities I have the privilege of knowing and working with who have triumphed in the face of adversities;
— the Indian technician who responded, “thank you for giving me the honour” when I thanked him for helping lift my mother’s wheelchair over a few steps of stairs.
— the older Chinese man who stepped to the side and stopped walking to give way to my mother’s wheelchair, smiled and lowered his head to acknowledge my mother and I.
— the young Malay waiter who made several trips from the restaurant to our car in the parking lot so that my mother may enjoy her lunch and avoid the risk of Covid infection.
— the dedicated advocates and activists for persons with disabilities who unselfishly guide and support me on my advocacy journey.
These are everyday yet heroic people and deeds performed out of the spirit of humanity that brought Malaysians together during calamities, like the Covid-19 pandemic and the flooding last year, to care for and support each other.
And because of these examples, I remain hopeful that we as a nation will progress toward a just society.
Sharifah Tahir is a full-time care partner, an advocate, and a Teepa Snow Positive Approach to Care certified consultant, trainer, and advanced consultant.
by Sharifah Tahir