Where Autism Awareness Should Lead

Other than in private exchanges I had with my family in Messenger group chats, I didn’t really air out any thoughts on the recent controversy over the incident of PWD-discrimination at Plantation Bay, an exclusive and expensive resort in Cebu. It wasn’t because I didn’t have any strong feelings about it, but because I felt so strongly that I would have reacted based solely on emotions, and that wouldn’t have helped the cause of autism awareness, an advocacy I’m very passionate about, any.

One with the Public Response

I was gratified to read the outpouring of support for Mai and Fin Pages as well as of indignation at what they experienced while vacationing in Plantation Bay. Like many, I was saddened and angered by the treatment they received while at the resort. I was similarly outraged by the initial response (now deleted, but the Internet is “forever”) issued by Plantation Bay resident shareholder Manny Gonzalez. Mr. Gonzalez was impressively articulate in expressing his thoughts. Unfortunately, his eloquence was misdirected. It laid out a misinformed and narrow-minded argument that belied the level of education and accomplishment his credentials page enumerated in painstaking detail. And like the masses, I was enraged by the very unsympathetic, very judgmental, very WRONG posit he put forth that Fin had just been misdiagnosed, and that his behavior was due to parental neglect and not to autism.

Did I feel inclined to storm the doors of the resort and scream at this seemingly pompous fool? Yes. Did I want to rally the people to boycott him and Plantation Bay, and generally make him pay for his scathing response to a genuine complaint that resonated with the depths of my very own heartbreak? Yes. Did I want to print out his sorry excuse for an apology letter and force-feed it to him? Yes.

That was my raw, unprocessed reaction. It was a maelstrom of fury and sorrow probably powerful enough to burst a vein. This incident gave force to my fears and worries. It threatened to snuff out the hope I felt for the possibility of an infinitely kinder, more understanding, more tolerant, and thoroughly inclusive society. It fueled the daydream of creating another world for my children and others like them.

It was upon reading his very hoity-toity résumé that my perspective shifted. He got his MBA in 1974, before I was even born. This man was probably the same age as my own parents. He is from a very different generation. He grew up with a very different mindset within societal norms that have drastically evolved through the decades. My own father, a great and godly man in my eyes, who loves his autistic grandchildren with every fiber of his being, feels that the best, most practical solution for “extreme” (obviously a relative word) special needs is institutionalization, segregation. He thinks that they would be safer there, better taken care of, and the neurotypical can function with better efficiency sans the constant vigilance necessary in the care of those with special needs. Like I said, such a position comes from a different time, a different way of thinking.

Manifestation of True Awareness

There are many out there like Manny Gonzalez – people who will choose to quickly judge and act upon their erroneous judgment. And then, in the face of public censure, they will offer a half-pantsed apology that clearly shows they haven’t actually budged an inch in their position. We can take offense, demand retribution, but, more importantly, we can continue to work toward awareness.

Almost everyone has come across the term “autism” and encountered somebody on the spectrum. Most people have a vague idea of how a person with autism is limited and challenged. True awareness, however, goes so much farther than knowing the dictionary definition of autism. True awareness comes with compassion and empathy, leading to acts of kindness.

I remember another mother venting about the pastor of her church. It seems that her son with ASD was able to practice with the rest of his Sunday School class for a special song number. That had previously been unheard of. The boy hadn’t been inclined to participate in the past, but that time, he was interested and he was able to stand with the group to sing instead of running off. During practice, the mother watched, incredibly thrilled about this particular milestone when the good pastor walked up to her and said, “Is it a wise choice to have him up there? He might ruin the performance.” The mother expressed her hurt over the remark, but she also had the grace to understand where the pastor was coming from. Obviously, it was from a time when children were forced to toe the line and imperfections were dealt with through their removal. People who didn’t make the cut, well, simply didn’t make the cut. Exclusion was the norm.

This account, mild though it may seem, is particularly disquieting. Inclusion should be a right, not a privilege. I can’t tell you how many times unintentional slights were directed at my boys for their autism, automatically excluding them on the assumption that they couldn’t do what the activity entailed. There was no effort at all to accommodate them, to offer certain allowances so they could participate. “This was the neurotypical’s world, the neurotypical’s program. It wasn’t the neurotypical’s duty to pander to the atypical’s different abilities.” This perspective must make so much sense to many, and yet it cuts and it stunts, causing hurt feelings and missed opportunities for progress for all involved.

Another story I remember is about a person with autism attending his high school graduation. His parents were worried that he wouldn’t be able to attend the ceremony because of the level of noise expected at such an event. Unfortunately, the man (he was already 21 at that time) wouldn’t be able to tolerate all the clapping and boisterous cheering. It is common for people with ASD to have sensory issues. Loud noises are often difficult, even downright painful for them to process. The entire auditorium, however, agreed to have a silent ceremony. The principal said that the decision was very characteristic of their community. Such a display of true awareness was incredibly heartwarming. In the current Pinoy vernacular, let me just say, sana all.

PWD Discrimination and the Law

There would be those who would struggle to make concessions and adjustments to their standards and operations in order to accommodate special needs. They may be good, decent people and still not get how inclusion is always the right choice – and, actually, in many countries, including the Philippines, the only legal option.

Discrimination against a person with disability, as the Plantation Bay administration is painfully learning now, is against the law. Unfortunately, not every PWD or parent of a PWD knows enough to raise a stink when discrimination occurs. Many of us are inclined to be apologetic about the inconvenience, the bother, the disturbance… the supposed perjuicio that our presence causes, and be resigned to the idea we just don’t belong and to the conclusion that the lack of welcome is completely acceptable. It is not, and the law is on our side. Of course, a law being enacted and a law being enforced are two different things. I’m not a lawyer so I’m not going to delve too deeply into the legalities of the matter. I just want to emphasize that the Magna Carta for Disabled Persons goes beyond the discounts PWDs can avail themselves of.

Fruit of Awareness

I have so many hopes and prayers regarding my own children’s autism that my brain just goes in a zillion directions when I try to talk about them. I mean, we have all sorts of awareness campaigns. Did you share a touching post on April 2 (World Autism Awareness Day)? Did you light it up blue? Did you add a spectrum ribbon or a jigsaw puzzle piece to your profile picture? These are good, appreciated steps, but I especially love it when people exercise this promoted awareness – when they offer a lending hand to a mother whose child is in the throes of a meltdown, when they just smile understandingly when an autistic child stims noisily at the next table, when they insist that our autistic children are welcome at their wedding, when they’re willing to amend tradition, the standard way of doing things to be inclusive…

We have a long way to go, but things are getting better. We can look at Mai and Fin Pages’s experience and see the bad, but we can also look for the good – the overwhelming support from netizens, the action being taken by government bodies, and the deeper awareness resulting from this unfortunate incident.

The Blessing of Autism

I hadn’t always felt this way, but I consider my boys’ autism a blessing. Our life is rife with miracles, as all of yours probably also are, but we are better able to recognize the wonder in the minutiae, thanks to this “disability.” Life with autism bestowed upon me such priceless gifts: patience, kindness, empathy, and many more.

In the end, I have to feel sorry for Mr. Gonzalez. He seems to have never encountered an autistic person that he had to resort to Google to try and explain it. Sadly, he also seems to have stopped at one paragraph because the Internet has so much more to say about autism. All I know is that if there were an autistic person in his life, he wouldn’t have dared to say what he did. I’m also sure that he would have been an infinitely better, kinder person for it.

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