Friday, May 27

So long for now

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CURIOUS acquaintances have often asked me what I do for a living. I tell them I am a Disability Equality Training (DET) facilitator. This will leave them with an even more befuddled look because it is an unheard of profession in Malaysia.

Essentially, I am a disability rights advocate, activist, and educationist all rolled into one. This sounds very sweeping but all three roles have one common goal, which is to make society a better place for myself and other disabled people. I have played one role or another depending on the needs of the situations.

The United Nations Convention on the Rights of Persons with Disabilities recognises that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”.

What this means is that disabled people face a multitude of problems in the form of prejudice, discrimination, lack of support services, and an unfriendly built environment. All these make it difficult for us to be actively involved in the activities of society.

In a Utopian world, disabled people should be able to go to school to get an education, go to work to earn a living, and move around freely for leisurely pursuits just like everyone else. However, this is far from so in the real world. There are simply too many hazards that not only hinder our social participation but pose risks to our safety.

The causes are multifaceted. We have laws that require the infrastructure to be accessible to everyone but failed by poor implementation and enforcement. Ignorance, lack of awareness and knowledge on disability on one part, and a disempowered community of disabled people on the other part, are some of the other reasons we are in this situation now.

This is where I come in. My focus is on equality, accessibility, and inclusivity, not only for disabled people exclusively but for the general population who are marginalised. I utilise various methods and approaches to bring awareness to these issues and effect change in the process.

I am not working for any disabled people’s organisation. Most of my advocacy and activism activities are self-funded. Part of what I earn from the workshops I conduct and my writing goes towards the non-revenue earning activities. This arrangement works well for me as it makes what I do sustainable.

The main problem I faced is the difficulty in getting the message across to the relevant stakeholders and the public. Stakeholders include the government, developers, building managers, and people who are directly affected by the aforementioned barriers.

Although I speak at conferences and seminars, the audience is limited. Moreover, the participants at these events were mostly people who were already sensitised to the issues. Likewise, the impact of my workshop is limited. I can only accommodate a maximum of 30 participants in each workshop and there are only so many workshops I can conduct.

However, I am glad to say the participants who usually did not have any inkling about disability at the beginning left the workshops with newfound knowledge and hopefully become agents of change. Social media and my own websites provide more exposure, but a wider audience outside these circles will do a world of good to the cause.

When I was invited to write a column for thesundaypost, I accepted without reservations. My editor gave me a free hand to write on any topic I desired. I am truly thankful for that. The availability of the articles online in a major newspaper has now allowed my reach to expand beyond the shores of Malaysia. Some of my writings have been referred to in academic studies locally and internationally.

I have shared my experience and adventures of living with a disability and ways to make society more inclusive. Readers got first-hand accounts of how my health steadily declined as my renal function deteriorated and how peritoneal dialysis has given me back some semblance of health and allowed me to continue working.

The purpose of sharing my life so openly is to show that end-stage renal disease on top of living with severe physical impairments is not the end of the road. We can still become useful and productive with proper medical attention, support from family and friends, coupled with large doses of perseverance.

It was through my writings that I was able to explore my inner feelings and my world view, especially the problems faced by disabled people. I taught myself to see the good things that are happening to me and accept the not-so-good things as part and parcel of life. It is all a matter of perspective and it does make a difference.

As such, I have come to understand myself better and my purpose in the grand scheme of things. When my time comes and I go before my Maker, I think I should be able to say I made a difference in my time here. I earnestly hope I can.

True to its namesake, this column has been instrumental in breaking the many barriers disabled people faced in public spaces. I have often pointed out the insufficiencies in the provision of accessible facilities and proper support services, some of which were serious safety hazards. Where repeated complaints through official channels failed to elicit any response or remedy, the management of the respective organisations were quick to react when the issues were published here.

I find immense satisfaction in being able to influence changes in some ways, thanks in no small part to my editor at thesundaypost. My utmost gratitude to her for giving me the space and being such a great ally in my quest to make society more inclusive and accessible. Together, we have created waves of change which continue to ripple through the organisations that were touched. Yes, we did!

This column has been running for slightly more than six years with 274 articles published to date. I feel fulfilled to be able to share my stories at a time when I was most productive. I hope readers found them useful in some ways. I would also like to take this opportunity to thank readers who have reached out to share their own stories with me, some of whom have become friends.

As I reflect back on all that I have written, I feel that I have imparted all that I have wanted to share. What I have wanted to say has been said and all that I wanted to teach has been taught. I will just be repeating myself if I continue further. Therefore, it is time for me to bid adieu to this column with a heavy heart.

But this is not the end. I will continue the push for an equal, accessible, and inclusive society. And I implore readers who have been moved to become agents of change to keep the flame burning. We need more people like you to continue breaking the barriers in society. Let’s work hand in hand to make this happen.