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

BigBro’s Parables: The Parable of the Talking Ram

This new series of posts, categorized as BigBro’s Parables, are meant as a creative way to discuss issues in the autistic community. It emphasizes on the realities behind current practices in advocating for autism, as seen by yours truly. All characters appearing in the parables are fictitious. Any resemblance to real persons, living or dead, is purely coincidental. But the plots, nonetheless, parallel facts and issues concerning the autistic community.

I chose to use parables for the same reason Jesus Christ used parables in talking to people: they look, but do not see, and they listen, but do not hear or understand.

“Listen, then, if you have ears!” -Matthew 13:9

Continue reading “BigBro’s Parables: The Parable of the Talking Ram”

I’m Back!

After a bout of depressive moods and a long-enduring meltdown, I’m back. And despite calls to change my approach at issues, and even after being shunned by some parents for not complying with their so-called “agenda,” I’m back.

I’m back. There have been changes in me, but there are some things that hasn’t changed.

Sure, I’ve changed some of my real-life approaches, but the essence is still there.

I may choose to be silent at times, but my tone hasn’t changed.

For now, I’ll gather some.

Hang in there, bud.