Autism. Take the T out, and you get something positive. :)
Wednesday, December 3, 2014
My Experiences As An Autistic Do Gooder
I am Timothy. I am an Inclusion Ambassador with DPA (Disabled People's Association). I share with you my experiences with DPA, where I advocate across disabilities, cultures and potentials.
DPA is a cross disability organisation. We do not merely advocate for autistics. The term DPA uses is 'students with autism'. I like to think autism as a label like Prada and Hermes, but at the same time, autism is not a label. It is part of my life. I am autistic just like I am Singaporean, and I am of Chinese descent. Happy Chinese New Year to everyone!
What a way to start an auspicious new year.
We speak for all kinds of disabilities. When we speak up for people with disabilities, we have to speak every single person with disability. We want to be inclusive to one another, the disability community, while recognising that we must be included. We are equals as human being. There is no such thing as we have a greater need because of our disability. We share common challenges in the disability community. We have the desire to participate fully and effectively, to contribute to society, on an equal basis, as other people.
In DPA, we get opportunities to share our lived experiences. I spoke at the age of 5 and I was diagnosed with autism at age 11, when the ARC or Autism Resource Centre was formed. In my cohort, half of the people with disabilities in Singapore have a developmental or intellectual disability. I am glad DPA gave me the opportunity to speak to many educators and students. I hope my life story will better support autistic students to shine and do their best in their schools and hopefully, in their lives.
However, it is not just autistic students that I care about. I actually look across disabilities. I share a recent experience I have with Engineering Good Student Chapter, where I get to facilitate a discussion with a group of engineering students in universities, and fellow Inclusion Ambassadors who are wheelchair users.
Currently, I am not physically challenged. This is why I am physically in the discussion session. I emphasised that disability is not just about crutches and wheelchairs. After all, the sign outside accessible toilets is typically about a person sitting on a wheelchair. I also added that despite what the students see in DPA, not every person with disability is old. In the case of autism, may I hasten to add, not all of us are children. You, the audience, see at least four of us, autistic individuals who are adults, on this stage.
I am also heartened one of the students is so forthcoming. He shared his experiences using a wheelchair as he was warded in the hospital. He was treated for a physical injury. He tells us that disability can be temporary. Unlike physical disability, there is no cure for autism. Autism is lifelong and permanent. There are intervention to improve the way we interact with other people socially, though the response could be different in different autistic individuals.
With our sharing, we proceeded to do handicrafts, specifically, a rose, just in time for Valentine's Day, which just passed. The students taught us how to make a rose. We folded the papers, we cut the papers in a shape, and then we stuck the papers together. Result: beautiful flower. I dedicated this flower to a fellow Inclusion Ambassador with visual difficulties because just because one does not see, doesn't mean one cannot feel the love for Valentine's Day. Disability is not just what you can see. I understand we are very much visual, but we want everyone to feel the spirit of love and support in our society and be fully integrated and supported to do good for Singapore and the world.
Although I roughly had an idea of what the students wanted to do, I just asked the students again, what they would like to achieve out of their visit to DPA and do the handicrafts with us. They replied that they wanted to create a more user-friendly wheelchair. The Inclusion Ambassadors went on to share their experiences in their lives. However, there are moments I have to interject.
I caught the slip of the tongue 'wheelchair bound'. I allow another Inclusion Ambassador to chime in and share her experience about being moving around more smoothly in a wheelchair.
When an inclusion ambassador talked about difficulties moving to get into and from a wheelchair, I specifically paused the discussion, just to introduce the concept of Activities of Daily Living or ADLs. They are what we do to get going in the day. Go find out more about ADL yourself. I just want to highlight the need of functional mobility or 'transferring', which might also be a common issue for people as we age, including autistic individuals. Yes, we age, too, and autism support groups with elderly folks like to tell us their mishaps linked to the different ADLs.
Overall, I am glad we have get to sharpen the project goal of the group of Engineering students. At the same time, I am also happy I can support fellow Inclusion Ambassadors to share their experiences in a more thoughtful and focused way.
When different people with different disabilities, and different ideas come together, this diversity will bring about a common vision and direction for all of us to do wonderful things. I will urge autistic individuals to come out of our autism silo. We will have a broader view of our world when we open our hearts and minds, sometimes even hands like what I experienced, to the different potentials our world has to offer to us.
I strongly believe cross disability advocacy will work out well for autistic self-advocates. We need to have a spectrum view of autism. Different functional labels or diagnoses should not divide us. Every individual has a different need and we should never let our childhood to decide the kind of resources we want to seek, to improve our quality of life and enable us to contribute to society even more.
My experiences in DPA has brought me to a greater awareness of cross disability advocacy. I do all I can to have inclusivity within me. I even look out for ways to improve accessibility across borders. When I attended the Asia Pacific Autism Conference in Sydney, Australia last September, I enjoyed spotting accessibility features such as Braille on bus stop buttons, wheelchair accessibility in buses and trains, and hearing loops. I should say Singapore has its strengths though there are some things Singapore can learn from other lands like Australia, especially accessibility for those with visual difficulties.
This leads me to my thought of cross border cross-disability advocacy. Like Singapore, Australia also has challenges towards more accessible society. One would be the lack of wheelchair accessible public transport options, as not all trams or buses or trains I rode are equipped with facilities to allow boarding of wheelchair users, and there are also shortages of accessible parking spaces. This is essential as public transport frequencies in Australia are much less frequent than those of Singapore’s, and the central city is often too busy for cars. Not everyone drives around, too.
I also remember an episode where we have an autistic delegate in the conference. He wears hearing aids. From other autistic delegates I hear, I gather he has hearing difficulties and is autistic, too. He uses Auslan, or Australian Sign Language, as a mode of communication. I know a little PECS (Pictorial Exchange Communication System) and I really enjoy non-verbal communication. I am also fortunate to see Singapore Sign Language or SgSL in action. But Auslan, it is not totally the same as the SgSL I saw. Using my atypical autistic ingenuity (slight pause), when I see this delegate with his hearing aids, I just did what I did with non-verbal autistics. on the Notes app on my phone, I wrote, ‘Hi’.
In DPA I was taught, if I need anything, I need to take the initiative to ask for accommodation, and if it is not given, I must be informed. I just safely assumed there will be an Auslan interpreter in the conference. Anyway, I asked whether there would be an Auslan interpreter.
(I thought there is) No harm asking, right?
I was then told – there will be no Auslan interpreter in the conference.
It certainly sounds devastating. And soul-crushing. In a supposedly inclusive space, we are not able to accommodate all people like me, we are not able to get the fullest experience in the conference.
In future, I make it a point that if we want to bill an event as an inclusive one, with real participation of people with disabilities, they better meet the needs of the participants. Given that there will be a major autism conference, the Asia Pacific Autism Conference 2019, the following year; I hope we will prepare better to support reasonable accommodation for the participants that come to the conference.
DPA has also given me the exposure to different cultures. In my short time in DPA, I get to work with people with different experiences in different lands.
In DPA, I have the privilege to attend a few workshops by DPA’s first and original Inclusion Trainer, Mrs Nina Munday. Nina, who hails from Scotland, gives me insights on not just the cultures she experienced, but also the best practices of inclusion and equality practices that is not just best British practices, but also Singapore’s very own. (Note: Nina is a Hong Kong-born Scot lady.)
When Nina went back to Scotland, I am glad DPA found a powerful trainer, Ms Asha Karen. Asha was already an accomplished lawyer in her home country, India. I also learn Singapore can have much to learn from the strengths of India: strong individual rights for all people, proactive approaches to disability rights, and powerful people with disabilities-led movements that takes the charge in disability rights movement in India. All these in the context of the limited national incomes India has, on average, as compared to Singapore.
Singapore has also come a long way. Singapore has little disability-related legislation that I know of. Singapore only ratified CRPD on 18 July 2013. We have progressed so much in a short span, from a nation when wheelchair users were told ‘it is more cost effective to not install lifts in train station’ to one where almost all buses are wheelchair accessible, from a nation where people with disabilities are seen as ‘beneficiaries’ to one where we can come together, contribute to society and the workforce – even TAFEP (Tripartite Alliance For Employment Practices) recognises there should be no disability-based discrimination, and celebrate our abilities. Yes, we are able!
As a citizen of the world, living in a global village, I learn that I am one of the many out there. There is no country better than other countries. In one of the activities, I think that is Common Purpose, a participant who is born in Australia asked whether there are initiatives in Singapore where we can be given grants to live our own lives and make our own decisions. I do not know of any such initiatives in Singapore right now.
However, Singapore has a unique strength in identifying family as our basic society. I am glad in Singapore; many supportive families empower their family members with disabilities to be our neighbours and our friends. Now, we have a Disabilities Council, where parents from different informal support groups outside our disability organisations gather together, with Disabled People’s Association (DPA) and Institute of Policy Studies (IPS), to gather and propose current needs and gaps, the resources and limitations, that bring out the best in all Singaporeans.
I guess it is different society, different approach.
DPA has also developed the capacity so that people with disabilities, along with it autistic individuals, will be better able to face the challenges of our futures.
In the past few months, younger DPA members stepped up to form the DPA Young Adults Section. DPA needs to develop the capacity for the next generation of leadership. In view of this, DPA members between ages 18 to 35 are in this Section, with programmes and initiatives to develop the know-how and confidence to move the disability community forward. Across disabilities, selfless, forward thinking and determined leaders that deliver change and empower the disability community will have to move their communities, so all of us can embrace the future.
With the Section, autistic leaders can benefit too. We can learn from the know-how through advocating for disability, through dismantling the barriers within different disabilities, to destroy the barriers within our minds and hearts. We will have to stand firm and think of consensus to move through the parents, the treatment providers, the non-government organisations, the government and the public, just as any public- and disability-facing organisations are reasonably expected to prepare for. We aspire to be our own voice and bring our autism community into the future.