April Hot Topics: April Fools’, World Autism Awareness Day, SCROOGLED, and Future Posts

(Trigger warning: Autism Speaks, autism “cures,” strong language, ableism)

Well, it’s been a long time, folks, since I have posted anything here on Autistic BigBro. I have to admit, though, that having a lot to say is really hard on someone like myself.

Ah, well. Here we go.

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It was actually fun writing this year’s April Fools’ Day post. I surmise that some people actually believed what I said that I’ll be quitting posting content that criticize the actions of some “advocates” in the autism community, and that I was sorry for doing so.

But as I said toward the end of said post, “Who am I kidding?” I’m not going to bend over backwards for some butt-hurt sod just because they were offended by the message I was sending across. Kind of like “shooting the messenger,” only that the messenger is also the origin of the message.

Either way, and as I always have maintained, I am not sorry for calling out the errors and suggesting ways to rectify those errors. I took the burden of being a vanguard for the rights and self-determination of autistic individuals, which are being compromised by the elitism and hypocrisy being furthered by scoundrels claiming to be “advocates.”

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And speaking of elitism and hypocrisy, this day marks a series of events which, until now, do not make any sense to me whatsoever. Yes, dear friends, I am talking about “World Autism ‘Awareness’ Day” and those events being held here in the Philippines and around the world.

I am still appalled that some people light things up blue, not knowing that they are actually being used by the bigots at Autism Speaks for free advertising. I happened to stumble upon a post on Facebook on this event in a mall where only a handful of people attended, and another where a “prayer rally” was being held.

Help me grasp what these people are doing, because seriously, what’s the point of holding these events? Will these events really promote the rights of autistic individuals and empower them to stand up for themselves, or are these being held just so some parents and professionals can continue inflating their organizations’ egos and their own?

And by the way, allow me to remind you that “World Autism ‘Awareness’ Day” is still being hijacked by the bigots and eugenicists at Autism Speaks. Just so you know.

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This part was not supposed to be part of this post, but now it is, no thanks to an article I stumbled upon. Click this link to read the article: http://www.cnbc.com/2014/11/06/can-google-find-the-cure-for-autism.html. Warning: Read the article at your own risk!

In case you didn’t click the link, it’s about the bigots and eugenicists at Autism Speaks conniving with Google hoping to find a “cure” for autism.

Everyone knows what my stand is on this matter. Again, what’s the point?

Besides, it could produce a chilling effect, setting a precedent for the elimination of autism, and therefore autistics, from the human genome and therefore the human race; worse, it could set a precedent for further eugenics against those with other disabilities. In this era where people claim their human rights and fight for those, it is quite ironic that there are still some people who think backwards and pursue unethical and illegal approaches in pursuing their “goals.”

In other words, we’re SCROOGLED.

I am so dumbfounded at this point. I will have to expound on this matter later. Oh, wait. I already just did.

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Upcoming posts will tackle on the following issues:

  • Pain in Giving
  • Bitterness and Resentment among Autistic People
  • Underestimating Autistic People’s Capabilities
  • Treat Us as Your Partners, not Your Projects
  • The Illusion of Inclusion
  • The Big Announcement

Do keep posted. Subscribe to Autistic BigBro, like the Facebook page, and comment!

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No Apologies and Think Before You Click: Reader and Hate Mail

Greetings.

First of all, it has been a long while since I posted something here.

I am being bombarded again with invites from hypocritical elitist “advocacy” groups that claim to promote an “inclusive” society yet obscure real voices of autistic people and their parents.

Again, before everyone goes “Bitter pa more” and “Eh, ‘di wow,” let me reiterate my previous point I had posted in my post titled, “I’m Not Walking: Action, Protest, Moving On, and Other Things“: Which is better, three minutes of fame for your showcase “performers with autism” or a lifetime of empowerment to allow them and their fellows to stand on their own?

The second option, my friends, is something that has never been done by some of these groups — they prefer to concentrate their clout among themselves and a few of their “friends,” and when the people for whom they claim to advocate stands up for themselves and stands up to these elitists for their BS, they treat those people as if they were lepers and actually exclude them from being part of the advocacy. So much for their claim for “inclusion.”

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I owe apologies to no one, not in what I say or do here or anywhere in the ecosystem of autism advocacy (include the entire biosphere of disability advocacy as well). Demanding apologies from me for criticizing unethical and hypocritical practices and voicing my insights is ridiculous, arrogant, senile, and corrupt.

Do your egos get hurt by what I say here? Oh, that must have awfully sucked. But come on, now. Creating drama doesn’t work, especially if you people know you’ve wronged someone — and now you have the audacity to demand an apology from me and command me to shut up. No, that doesn’t work that way.

Again, I owe no apologies to anyone. Enough said.

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Okay, enough ranting. Or so it is.

I have been receiving some correspondences from readers posting on my Contact page, and one of them was somehow unsettling. This post came from a certain Mike R., who claims to work for Autism Hearts, an organization that I mentioned has a connection with Autism Speaks, which is another group I hate for its “cure”-focused, eugenic, and autistic-exclusive policies. The writer was promoting a project by that group, together with a corporate social responsibility program (more of that in a moment).

Here is the photo of the email that they sent:

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Hi, I’m Mike R., the admin for the Autism Hearts Foundation’s new blog, “The FAAB Project”. It’s a blog specifically dedicated to AHF’s new program, FAAB (Fashion Arts Autism Benefits), which aims to harness the skills of five artists diagnosed with autism, to decorate and help create special clothing articles These garments will then be paraded at a fashion show and auctioned off; the proceeds will go to the artists and their families and helpers. It’s a new blog so there are no published posts yet, but I will be launching it very soon with the first few posts. I hope you will like it, and I’d like to stay in touch! (P.S. My real name’s Mike, but I prefer to be referred to as “The FAAB Intern”, mainly because this blog might have other contributors or admins in future, meaning it won’t be exclusively my personal blog, but rather an organisation blog connected with Autism Hearts.)

At that time, I didn’t know why they sent me this letter, but I had a bad feeling about this. I responded with this:

Thanks for your e-mail, Mike. I hope you were able to read the contents of my blog, and understand its nature and my cause.

I would like to ask some questions:

– How did you come across my site?
– Who are these “five artists diagnosed with autism” you are taking about?
– How much do you know about the group for whom you work?

I may ask more questions in days to come.

Until then, cheerio.

I was expecting a quick reply, because I replied as soon as I received the message. I hadn’t, so I took the liberty of finding the identities of those “five artists diagnosed with autism” myself. Basing my research from social media and from contacts, I had deduced their identities, many of whom I happened to know personally. I guessed I answered my own question.

Two weeks later, Mike responded. His response was:

1) He was looking for other autism-themed bloggers and sites to network with, to raise awareness about creative opportunities for those with autism. He started the said project as an exercise in blog and social media marketing, from a seminar he attended.

2) He claimed that he is not at liberty to reveal the artists’ actual identities, and chose to have their names altered and their faces blurred out. He claims that they are “just five young artists who happen to be on the autism spectrum,” whom he said aren’t famous and that I won’t know them from anywhere. (Wrong. I do know them.)

3) He claimed to work for the Autism Hearts Foundation on a semi-contractual basis, as a marketing and publicity assistant, in a sense.

He then proceeded to promote links, which I will not be posting on this page.

Okay. My gut-feeling told me right — there is something wrong with the project. I used to work with one of these groups, and professionally, they are not really good clients. But I will delve with the details in a later post. Anyway, it seems that my previous points were unanswered, so I responded with this:

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Thanks for the response. Not as quick as I expected, but okay.

My response to your points:

1. I understand that you were looking for autism-themed bloggers and all that, and that you attended a seminar on social media marketing, but I feel that my question was left unanswered. So I will ask the question again (NB: Due to some clerical issues, the question I was supposed to ask, which was“How did you come across my site?” was not inputted.)

2. Between the time I sent my email and the time I received your reply, I took the liberty to look up and check who the artists were. Based on personal contacts and social networks, many of them are of legal age, and I happen to know them personally (which invalidates your argument that I don’t know them and I won’t be able to). What I do not make any sense of, however, is your claim that you chose not to disclose their identities and went so far as to blur their faces out (for “privacy” reasons, as you state) — which raises a lot of questions: How would these autistic individuals be recognized for their talent? Are they and their families aware conscientiously that this would be the setup, selling their wares without people knowing who made these masterpieces?

3. If you really have read what I have been posting in my blog (which I hope you did — NB: Looks like they didn’t), you would have known that I have a great distaste for the groups for which you work. I have said some statements on Autism Hearts before for being associated with Autism Speaks, a sham “charity” that has a bad reputation among many autistics themselves for being pro-“cure,” excluding of autistic individuals, and presenting autistics as poster children to extort more money from well-meaning and high-profile people, among others.

From what I am reading on your blog, as well as what this conversation is going, I am hesitant to consider your project as one of good cause and real benefit to autistics, because I am smelling prejudice, tokenism, and ableism at this point.

Nonetheless, I took time to check out the links you were sending me, and at the moment, I still have a lot of questions on the nature of this project.

Until then, cheerio.

A day later, Mike replied that he was sorry that I disagree with the aims and the methods of the “foundation” (wherein he was right), but that he does not share my feelings. He attempted to justify that he did not have the authority to reveal the artists’ names, because they client (who?) does not want their information to be shared.

I saw no point in continuing the conversation. Five days later (which is at the posting of this story), I responded:

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Hello, Mike.

Thank you for your time to respond to my concerns.

I understand that you do work for the group you are currently involved in, and you were correct when you said that I disagree with the methods they use, many of which are short-term and tokenist in nature. Either way, I can see that you are trying to be in solidarity with the autism community, albeit your cause and that of your group is not congruent with mine.

Though, when you said “the client may not want their information to be easily spread online,” my inquisitive side is wondering if that was their of their own bidding or your assumption. Either way, I won’t take it against you, since that is your opinion.

Nonetheless, I appreciate your contacting me for your project. Unfortunately, until a way can be found that the project and the organization for which you work matches the principles I stand for, which is empowering people with disabilities toward genuine inclusion and understanding, I am afraid that the project you work in cannot merit my endorsement, let alone promotion.

I hope you understand. Good luck.

Cheerio,

Autistic BigBro

There you go.

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At least the mail I received from Mike was professional. But some readers went below the belt, and to top it all off, they don’t know the concept of “think before you click.” I considered writing a post dedicated to social media in the next few days (when I have the time and the proper set of composition), but this one really set me off.

This was sent to me on Facebook, when I was in the middle of a meeting at work. This came from Carl, a former colleague of mine from a group I used to be associated with, but chose to abandon me due to me calling them out on their elitist and discriminatory practices.

By the way, he was this guy who commanded me to take down Autistic BigBro and stop calling out his group’s hypocrisy and elitism. I said no, and he spewed drama all over my Facebook ecosystem. Though, he got to unfriend me before I did, and I broke contact with him ever since. However, he came back at an inopportune time to try and taunt me. Here’s the post:

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It read (verbatim):

Hey, Gerard, My mom found out that you will no longer be the board of trustees. You know if you embarrass someone, you will be unpopular. I heard you embarrass at Los Banos last Sept 17 i did not embarrass that. You know why, you are paranoid. CURSE YOU

Normally, I wouldn’t post this online, but the guy gave me no option to reply “I have absolutely no idea what you are talking about.” Apparently, he chose to block me from his Facebook account, and I responded back. I reported his post as abusive, and blocked him back.

But at least let me answer this guy with a few points:

  • First of all, I have never been a member of the group’s board of trustees, let alone me being the “board of trustees.” I once advocated for a seat or two for autistic self-advocates in the board (even if it didn’t have to be me), which the current trustees rejected (more of that in an upcoming post).
  • I absolutely have no idea what happened on 17 September at Los Baños, Laguna, but I was at Vigan, Ilocos Sur at that date, meeting with local officials, and there was no way I could have wreaked havoc or created a ruckus from 500 kilometers away, so I am dismissing that accusation as hearsay, or should I say, plain bull.
  • Me? Paranoid? Look who’s talking. I broke all contact with the guy since he spread Internet drama over me refusing to take down Autistic BigBro, but hey. You, me readers, be the judge.

I hope his mom have a real word with him, to remind him of the principle “Think Before You Click.” Until then, up his.

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Cheerio, then.

Autistic BigBro

Autistic BigBro is Still Open, and Won’t be Closing Anytime Soon

Okay, so maybe I have been busy here in Ilocos, in the northern part of the Philippines, where I am currently employed as part of a community-based rehabilitation team here, and I have been struggling to add content here in this blog, but that does not mean I have abandoned my mission as your BigBro here. It just so happens that real life is much more fun than online, and that is what I have learned from being in the grassroots level, 400 kilometers away from the elitist “advocacy” groups out there.

Speaking of which, just a few hours ago, someone who used to be a colleague of mine from one of those groups wanted me to take down Autistic BigBro and stop talking negative stuff about that particular group, threatening to take me off their Facebook friends list. Of course, it went through a very long discussion, until I had had enough of their nonsense and said “No,” all which unfortunately ended in Internet drama and them taking me off their Facebook friends list.

Here is the deal: I may be busy, but that doesn’t mean that I have given up the fight. I am your BigBro, and I will go through all the ends of the Earth just to stand up for what is right for us. As long as there is something that we must stand up to, I will not hesitate doing so – even it it means “losing” (which is trivial compared to the gain that will be gained in the long run).

Just making my point known. Until then, cheerio.

Autistic BigBro

On Self-Advocate Leadership, “Technicalities,” and Ethics

Before words get put into my mouth again, as what apparently has been the case in the past, allow me to reiterate that I have never been against parent advocacy, nor do I intend to shut down parents’ voices. As a matter of fact, we self-advocates consider parents to be invaluable partners, the very people who continue to support us, despite our various weaknesses. I write to express what I observe, and what I offer as ways to make things better.

One of the issues that I have observed is plaguing many disability groups, be it parent-, professional-, or self-advocate-initiated disability groups, is how the leadership runs. No, I am not talking about whoever is seated there, be it a parent, a teacher, a doctor, or even a fellow with disability. No, we’re not talking about them personally, or whatever they do. Rather, we’re talking about the workings of an organization.

The trend, as they say, is going toward inclusion for all, regardless of ability, gender, race, or whatever sector we are in. The saying “Nothing about us without us” (or as I prefer to say, “Everything about us and for us has to be with us and by us”) applies to every marginalized sector, not just disability. It goes without saying that leadership opportunities, especially in the top levels, should be given to anybody who qualifies.

But I’d like to present a dilemma that I see hinders genuine inclusion. It’s basically the rules of the organization. Take one fictitious organization as an example. “This Foundation” (Note: the name of the group is named as it is) was founded by a group of rich philanthropists who aim to serve the LGBT community, and was established decades ago, when homophobia was still tolerated. They managed to pull off years of being criticized due to their principles and their service to the community they served. But in this era, wherein they advocated for inclusion and equal opportunity as a standard procedure, their rules state that only rich philanthropists may be at the Board of Directors. When one gay man, who was a veteran volunteer of the group, attempted to run for office, his nomination was instantly derailed by one of the founders. On what grounds, the nominee asked. The founder invoked the Rules of This Foundation, stating that only rich philanthropists may run for directorship, and that nowhere did it state that a member of the LGBT community or anyone else for that matter is entitled for a director position.

What is wrong with this situation? Here is what I perceive. One, it is ironic that it claims to serve the LGBT community, yet does not allow their constituents to be part of the top leadership. Two, it is hypocritical that “This Foundation” is promoting inclusion and equal opportunity, yet their rules hinder the very principles for which they claim to stand. Three, it is blatantly unfair on the part of the veteran, who spent years with the group but is denied top leadership simply because the rules say so.

Yes, there is a fine line between what is ethical and beneficial for all and what is according to rule and tradition; and while the line is being crossed for the improvement of the organization, there are things that are being overlooked and are simply not being paid attention to. Is is the priority of the group? That is left to opinion. But allow me to invoke passages of straining the fly and swallowing the camel, as well as removing the speck from someone else’s eye with a log in your own eye. I leave that part to your own interpretation. Everything else I wrote is what I have observed, and what I opine on.

So, then, what do you think should be done? Everything that most groups may have been done with good intentions, but there are some things that we all need to improve. Not to say I’m perfect or anything — I myself have a lot of things that I need to work on. But it is just pretty my thoughts, and again, I don’t intend to shut people down, but rather make myself heard in a wilderness where some don’t give a care about what people think.

Until then, cheerio.

Autistic BigBro

Everything About Us and For Us Has to Be With Us and By Us

It’s been a long time since I have posted something here, since I have to look for and make some money to help finance both my personal needs and my cause. Yes, that is right — I am looking for a real job, a job where I am actually good at. Well, there are some jobs that I would really hate to come back to, but would have to when I have no other choice.

Anyway, I am still hanging in, and giving some things a last shot before I come up with a resolve. After all, some things deserve a final chance, even if you’ve given them plenty of chances even to breaking point. Let’s see what happens.


I have noticed, and therefore learned, that many in the autism community (particularly parents, families, and professionals) do not take critical or straightforward approaches in advocacy, approaches used commonly by many autistic self-advocates I have come across. Yes, there is definitely room for improvement in the autism community, and it is the duty of every autistic individual, who are being served and guided by their families, teachers, doctors, and other support people around them, to be part of the society to where they belong in the first place.

I tried, with limited success, to be honest and straightforward with my messages. Some understood what I meant, others have to be pushed a little more, and yet a few are difficult to get by. The primary criticism I receive is “You are so negative; we want something positive.”

In response to said criticism, I would like to present a different approach to a long-used slogan used in the disability community promoting self-advocacy.

Everything About Us and For Us Has to Be With Us and By Us.

Everything. As if this alone fails to make a point, let me say it — policies, laws, issues, activities, discussions, events, programs, practically everything that is done, spoken, taught, or even thought.

About Us. Anything that concerns and has something to do with us, our well-being, and our roles in society.

For Us. Anything that is thought or done with us in mind.

Has to Be. It is an urgent matter, something that needs to be taken very seriously.

With Us. We have to be part of everything that has to do with anything that concerns us — from planning to assessment. In other words, from start to finish.

By Us. We need everyone to allow us to start anything that concern us ourselves. Of course, we, like everyone else, may need all the help we can get, but allow us to be in all lines, from the limelight to behind the scenes.

It’s typically a more positive approach to “Nothing About Us Without Us Is For Us,” the more popular battle-cry among many self-advocates in pushing the fact that no policy or activity should be done by anyone without the full participation of the people to whom that policy or activity is directed.

In other words, people with disabilities (mobility, orthopedic, sensory, developmental, intellectual, psychosocial, etc.) have to involve themselves and be involved in all things that concerns them.


Speaking of which, I am about to be past the standard age of youth. That means, I have little time left before I speak out as a youth leader. So, I’ll take advantage of everything I have got, and hopefully, before I turn thirty years old, I have fully established myself in terms of practically everything.


I am continuing my BigBro Parables anytime this month, when the time allows. Until then, cheerio.

Autistic BigBro