Working with people with disabilities (PWD) and their cause has been my first passion. I had counted myself as one of the blessed ones who have discovered my passion early on in my social work career. I sought out jobs related to it even before graduation. Having encountered kids with autism in my uni days and later on, with others with disabilities during my 2nd placement sealed the deal. I was sold. There was so much that can be done! They are marginalized, disadvantaged, discriminated, misunderstood — so lacking in services, so little public awareness, so sidelined. It was with PWD that I found the avenue to devote my energies, my thinking process, my skills in connecting and my quest for justice. I’ve taken proud in having created activities and programs for the benefit of PWDs and families — be it parents support group, education group, sibling workshop, youth program, reading program, camps, computer learning program, sex education syllabus, prevocational training….. Yet — by and by, I felt I had plateaued, reached the limit of what I can do and wanted a new adventure. My passion and desire to make a difference for PWDs didn’t change just that, I thought I can return to it in my retirement years after I’ve had experienced others.
I’m not sure exactly when that part of me waned and was forgotten after I’ve joined healthcare. I wanted an adventure, an exposure to other aspects of life and social work. I got it. Healthcare felt like a home I didn’t really have when I was working with PWD. It felt at home cos the organization and the department I was in had a good structure. It had challenged my earlier belief about structure — that it kills creativity and the space to explore, create and expand and I had rejected any thought of it. After all, the structure I had experienced had been arbitrary and serves the interest of the few, hence I had some disdain for it. But in the new environment, I had thrived. The structure in place expanded me and my quest for knowledge. It created a learning platform to take in new knowledge and methods to acquire that knowledge. What is the medical condition, how is it diagnosed, technology in each of these diagnoses, how is it treated, what are the side effects? Beyond that, I was taught to look at the narrative of each condition and how individuals experience it, interpreted it differently. What is the differences between disease and illness? How to create that understanding for all stakeholders, especially for doctors who wield so much power over diagnosis, treatment and illness trajectory. All these was so exciting!
My energies and my extroversion need for connection also found a new home in a department with so many social workers. Call it my echo chamber and what it will, but it was a sharp contrast to where I was in where I had only had one other like-minded person in my 11 years but our friendship had waxed and waned in unfortunate ways. Yet even in that friendship, I had not experienced an exchange of knowledge, an invitation to expand, to explore further. This place has! And so, for more than 5 years, it felt like home! In my excitement and when my cognition and quest for knowledge had expanded, my old friends from the PWD background have not.
Each gathering increases a sense of drudgery. Our gatherings are time of reminiscence and ventilation. The same story was heard umpteen times, the experience of annoyance and frustration sees no change. I began to see them and perceive myself and my friends from PWD field as broken and messed up humans wanting to feel better about ourselves by working with PWD. Though it is not consciously of selfish intent, it does surface our chip off our shoulders. We hold as trophies PWDs who value us, trust us, and we take huge pride that we have made a difference in their lives. The awareness makes me desire a conscious desire to work myself out of a job. The quest for more resources, equality and justice need to be fought by those most affected by it — and they need to be empowered to do so.
At the same time, the experience and recollection of my work with PWD and meeting with my friends was in sharp contrast with that of my new experience. I felt energized by the latter while the former drains me. Without realizing, I had begun to despise that company or anything associated with it and I view it as an industry that refuses to grow.
My short time back to the world of working with PWD affirmed it. After leaving healthcare for a brief period, that 4 months in the SPED was a nightmare! I had disdained that lack of structure where decisions by power holders are arbitrary, fickle, and continuously undermining professional staff over paranoia and fear. Previously I had more energy to negotiate around it, but perhaps with age and negative experiences, I no longer have taste for it. The professionals are still busy putting each other down to show they have the necessary knowledge and skills while keeping the PWDs and their families as mere recipient and mere beings being judged and deemed as unkind and ignorant souls needing guidance to take better care of their children.
That short experience left me with a deeper sense of disdain for PWD work. I still believe much can be done, more expertise can be developed, great capability to address emerging trends of the work, just that I don’t have appetite for it. In fact, it left a terrible after taste.
All till — my current role as a trainer, teacher, lecturer, course designer, it calls for me to go back to this place of my initial passion. I have been wondering about it. Interestingly, without having to work intensely with the people who manage the system, it drains my energy lesser. I learned new things, developed new courses based on new found knowledge and merging with my knowledge of the system. Gratefully I met more like minded ones who are ready to exchange some knowledge with me. I still encounter the old guards of the system whom I find possess a limited knowledge yet all ready to boast about it and have a little more energy to negotiate around it, again fuelled by lesser frequency of contact.
I have wondered about God’s purpose. Do I have much more to give in a different capacity or I have a whole lot more to learn or have I uttered some prayers from a decade ago that He is fulfilling or …. I’m not sure. But both SSI, SUSS had a different period invited me to different projects related to it. Working on it brings back memories, it also requires intensive finding out more, get me updated on what is out there, and it did ignite sparks of interest about the various topics. Early intervention, transdisciplinary approach, child centre or family centred practices, ASD, different life stages and most of all — how to integrate them alongside stuff that I learned whilst in healthcare. Using BPSS to examine disability through life stages; Reorganizing materials that take into perspective of how to build knowledge incrementally; Thinking from perspective of the students and how it can be beneficial to the PWDs. I guess, these wouldn’t come naturally or easily to me if I were in those earlier stages of my life.
When I was working in PWDs, my focus is primarily with the PWDs, their families and the professionals who work with them, and I too had vilified general society for their lack of understanding and compassion. When I was in healthcare, it broadened my ideas to more professionals and other stakeholders — eg pharma, policy makers, fund givers and approvers, society at large, raising public awareness. Now in my venture into teaching and training — my main target group are students and other professionals where my focus is on building capability and expand capacity.
It surprise me that nothing seems wasted in my life, every part of my life seems lined up to this day — even though now and then it felt that way, that I had wasted part of my life or certain learning and experiences seems to be for a specific era and it has outlived its usefulness. Yet — it seems not so. Perhaps I really need to be patient and allow God to do His work in my life….. and be grateful for every moment….. even in ways that I don’t understand.
