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

2 thoughts on “On Self-Advocate Leadership, “Technicalities,” and Ethics

  1. Let me guess. This fictional situation happens currently in our country and I feel your pain too. That’s why I don’t want to join an organization who “represents the autistics” but turns a blind eye to the opportunity where self advocates share the same responsibility and power with the “philanthropists”. In addition, I find it ironic that our organization in our country insists not to use autistic in a derogatory manner yet they imposed a protocol to use a person first language as if the “autistic” word is an ugly scum that must be erased.(which unfortunately you failed to thwart as I read in your previous posts and also reflects the lack of respect of the the individuals to the very own opinions of autistics.)
    Lastly, I wish good luck with that hard battle of yours and by this prove that we autistics are equally capable of leadership and respect. In fact, it is our voice that must resonate louder than our neurotypical peers. 😀

    1. Well said. I know a lot of groups whose description matches what you have just commented on. Pretty unfortunate, isn’t it? Plus that campaign you were talking about was one of those I was passionate at, yet considering the reality within the group, it borders on hypocritical for me.

      I believe the time is ripe for us to unite each other’s voices. The challenge, though, is motivating our fellows to do so. Either way, it is a very hard battle, and I have to deal with my own battles as well. But hang in there — we’re going there.

      Oh, by the way, do you mind if I quote your comment on my next post? 🙂

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