It’s been a long while since I’ve actually posted something on this blog, what with being occupied with such real-life advocacy events as conferences, autism walks, cosplay competitions, and the occasional office work, among others.
To those who were expecting to hear from me through this blog, apologies if I haven’t written anything for a long time. But hey, here I am. I’m back. Hah.
In this blog post, I’ll be discussing what I consider as hot topics for April: a failed April Fool’s Day joke, World Autism Awareness Day, and the need for autistic self-advocates in the Philippines.
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It’s April once again!
I was supposed to do an April Fool’s Day joke by constructing an opening page, which, however, failed to materialize due to the ongoing Internet malfunction, what with underwater cables linking Southeast Asia to the World Wide Web. For more information on this issue, you may visit Rappler’s coverage, titled “Damaged undersea cables affect Internet in PH, Asia-Pacific.” In that opening page, I planned to claim that I am changing my alliance from being your Autistic BigBro to being an “official mouthpiece in the Philippines and the Southeast Asian region” of Autism Speaks, a group that I have consistently loathed for their words and views against autism and individuals on the spectrum.
UPDATE: The April Fool’s Day post has now belatedly been posted. Check out the post titled “Autistic BigBro Named Spokesperson for Autism Speaks in Asia & the Pacific.”
But again, it was meant to be an April Fool’s Day joke. Honestly, I’m not even going to think about even speaking pro-Autism Speaks agenda.
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Speaking of Autism Speaks, I have been quite disturbed lately by their fear-mongering tactics on the increasing incidence of autism diagnoses, which are not even from their own (it was the Centers for Disease Control — ironic, isn’t it? — who released such statistics). And look, Ma — it was even published in ASP’s Facebook page, and when I commented on even why it was published, my comment was deleted. Nice.
I contacted the admin of the FB page, who was one of my friends, and asked that, despite availability of objective and non-bigoted sources, why they considered posting Autism Speaks’s content. Their reason was it was aesthetically the best graphic content available. Graphic in terms of design, I’ll give them that; but graphic in terms of intent and vulgarity, well, hell yes.
Two days ago was World Autism Awareness Day, an event that, again, was UN-mandated, yet hacked by Autism Speaks for their own agenda. Anyway, Autism Speaks’s agents in the Philippines, Autism Hearts, instituted a Light It Up Blue here in this country, specifically at the Mall of Asia. Now, opting to stick to my principles, I happened to boycott the event, despite personal invitations (unsurprisingly not from Autism Hearts, but surprisingly from my friends at the Autism Society Philippines). But I have heard stories from those who were there.
Some of my friends who were there have said that the event was shabby and somewhat disorganized, and from photos published online, the event was held in a precarious location — the sidewalk near the , where motor vehicles were constantly passing by and creating noise, not to mention the fact that there were no barriers or anything visible to prevent any wayward public transport from at least disrupting the event. Add to the fact that the sensitivities of those on the spectrum, which ironically were for whom that event was, were not given attention to. An autistic performer (whom I tried to dissuade earlier from performing, which I later relented due to him already confirming) complained to me that the stage lights were directly shone at him and therefore was distracted and performed less well than what he wanted to do so.
Well, enough has been said about Light It Up Blue and the unsavory things that happened at MOA. I, on my part, have my own part in celebrating WAAD and protesting Autism Speaks and their bigoted hypocritical agenda: business as usual. And oh, lights out as well.
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This brings me to another issue. During my engagements with the disability community, I have been observing an area where autism advocacy is at its weakest: representation by individuals on the spectrum.
For decades, the autism community, as well as communities of other developmental and mental disabilities (DMD) such as AD/HD, Down syndrome, learning disabilities, and intellectual disabilities has always been represented by parents of children with said conditions. That being said, a clamor was recently raised by advocates of physical disabilities (wheelchair users, the deaf, and the blind, among others), claiming that it has always been the parents and professionals who are working with children and people with DMD, and they are pressing for advocates with DMD to become the representatives of their respective conditions in both the public and private sectors.
Just recently, I and my fellow self-advocates have stumbled upon a proposition by some parents of children on the autism spectrum who wanted to reinforce their place as representatives of their children at the local government level. The intention was noble, but how it was written was really disturbing and horrible. The document wanted to reiterate “that parents/guardians shall represent persons with developmental disabilities at the PDAO office in all LGU’s,” but the most appalling proposition stated in the document claimed that “persons with developmental disabilities generally/usually do not have the capability/capacity to represent themselves on issues and concerns affecting them,” a statement that is highly offensive and foul to those who have the ability to do so (myself included).
That being said, and considering the growing population of adults on the autism spectrum who are both able and willing to advocate for themselves and for each other, there is a growing necessity of having a self-advocate community for autistic individuals. I will elaborate more on that in upcoming posts.
Until then, cheerio.