Remembering Feilina Feisol

By Dato’ Dr Amar-Singh HSS

On 30 June 2024 Feilina Feisol died after a long struggle with lymphoma. She was a dear friend to many of us and her death leaves a vacuum in our hearts and the disability community.

Feilina was an active disability advocate, especially for autism. Bringing up a son, Naim, who is autistic, taught her the realities of the limited support in Malaysia for children with autism and their families. Hence, she actively promoted the development of services for persons with disabilities. Her aim was to have a “roadmap (a plan) for every child with every disability”. Unknown to many, Feilina was an accomplished swimmer from her school days and a technical swimming umpire, travelling the world to judge swimming competitions.

Feilina worked through supporting individuals, organisations, businesses, engaging government agencies and the media. She was the chairperson of the National Autism Society of Malaysia (NASOM) from 2016 to 2020, a previous member of the National Council for Persons with Disabilities (MBOKU) and a board member of Ronald McDonald’s House of Charity (RMHC). During her tenure with NASOM, she championed crucial initiatives. These included establishing schools and programmes specifically designed for autistic children, and fostering greater understanding by working with businesses to create autism-friendly environments.

Feilina’s dream was to bring the World Autism Congress to Malaysia to enable the world experts to gather in Malaysia under one roof. The Covid-19 pandemic unfortunately hindered it. She worked with the Royal Malaysian Police (PDRM) to develop a standard operating procedure to support persons with autism during the Covid-19 pandemic. Her devotion to be present daily and volunteer at the OKU Covid-19 vaccination drive-through was inspiring.

Feilina was instrumental in lending support to the Malaysia Airports Holdings Berhad (MAHB) initiative for the Butterfly Lanyard so that those with hidden disabilities will be accommodated to have a positive airport experience. Felina was also involved in supporting the work of the senator for disability, sharing her ideas on how best we could work to improve services and educate more people on persons who are on the autistic spectrum and other disabilities. She also supported other NGOs and was involved in their work. Feilina was an advocate for law reform and always willing to engage with, support and work with anyone who would provide an opportunity for any person with a disability.

In our many discussions, she was always realistic about the situation in Malaysia, the very slow progress for persons with disabilities, their families and care partners, but she continued to remain bubbly, cheerful and energetic about pushing for change. Her one-liners and hearty laugh would always lighten any tense or bleak situation and then she would calmly advocate for the change she envisioned. Her grit and ability to find gratitude and humour in any given situation were inspiring.  As she said “The strongest message from me to all parents is to keep fighting. Not to worry about being a ‘pushy parent’. Especially when you’re dealing with health professionals and the education authorities. We know our children and what we need to do that is best for them.” Feilina always spoke from the heart and her heart was with every child or adult on the autistic spectrum and her vision was for them to belong.

As many of us have learned, children with disabilities help us to discover the true meaning of life and living. In an article for World Autism Awareness Day 2021 Feilina said :

“My autistic son has taught me everything I needed to know about life.
Naim taught me how to love.
Naim taught me patience.
Naim taught me to think outside the box.
Naim taught me to be brave.
Naim taught me that it’s not only OK but that it’s good to be different.”

Some of us have a child with autism. Of course, each individual is different, but as parents we learn a lot from each other. Especially in a society which still needs to be educated and which needs to understand about PWDs, in particular autism. Feilina always shared selflessly.

Feilina was very authentic and did not care what others think of her as she strived to do what was best for children with disabilities. She was full of hope, even in her darkest and most difficult times, and never gave up. What kept her going was her bubbly and positive spirit. Despite being in a lot of pain she did not allow the cancer to dictate her life. And she constantly reminded us to keep working for the disability community.

Feilina Feisol was foremost a mother, a devoted daughter, a proud sister and aunt but also our friend, a wonderful person, confidante, shoulder to those who needed a lift and a great advocate for autism. Her legacy lives on in the many initiatives and programmes she started but more importantly in the hearts of all of us who were impacted by her life, unwavering spirit and advocacy. And for those of us working to uplift the community, this legacy will include our determination to continue striving towards inclusion for all persons with disabilities.

Our hearts, thoughts and prayers go out to Nasha, Naim and Feilina’s parents. May they find peace in this time of loss and some comfort in the life she lived filled with purpose, service and great contribution. She was immensely proud of both her children and they had Ibu always cheering them on, ready to take on any challenge they wanted to.

It has been a privilege and honour to know Felina. We will miss Feilina deeply, our nation has lost a bright light. But we will continue to be inspired by her life, that wonderful spirit and her work continues to shine.