May Hot Topics (Part 2): Guard-Dog vs. Lap-Dog Self-Advocacy, and The Many Hats I Wear

Dear readers,

I’ve been really thinking about the rhetoric of my posts lately, and I have to admit, I was somewhat becoming harsh. Some of my readers, particularly parents, have been commenting on how my statements online (specifically in this blog) has been affecting their advocacy for their children, and that they felt offended because what I write apparently undermines what they have been doing for their children, particularly those with severe to profound cognitive issues. Some would even go so far as to question my capacity to actually be an autistic advocate.

To those concerned, I am sorry to hear that your feelings are hurt or that you are offended with what I say, write, or do, but I am not sorry that I have to stand up to what is obviously wrong. Plus, let me clarify that my leadership capacity has nothing to do with my messages. Don’t get me wrong when I am saying that we self-advocates who can speak have to stand up for our community. Believe me, I have never been against many of your causes — as a matter of fact, we all share the same causes, and those causes are for our well-being and significant representation in society. But there are things that could have been done better, and as a brother, a son, a nephew, and a friend, it is within my responsibilities to be on alert and call out things that are not for the long-term well-being of individuals on the autism spectrum.

And, oh, I don’t have problems with people, especially you. But I do have problems with what people do.

Enough has been said about my thoughts of the moment. Now, in Part 1 of our hot topics for May, I have discussed my stint at the 10th National Youth Parliament, and the right of every autistic individual to advocate for themselves as defined in the UN Convention on the Rights of Persons with Disabilities.

I know it’s June, and it’s so late for May (pardon the hiatus), but it’s about time that we go to Part 2 of our May Hot Topics, where we discuss the fine line between a true autistic self-advocate and a mere poster child for autism, as well as the many roles I play in this society.

* * * * * * * * * *

So what is “self-advocacy,” anyway? The Collins English Dictionary plainly defines it as:

self-advocacy: the practice of having mentally handicapped people speak for themselves and control their own affairs, rather than having non-handicapped people automatically assume responsibility for them

In other words, it’s about us speaking for ourselves and making our own decisions instead of others doing so for us. Contrary to popular belief, self-advocacy is not meant to supplant mainstream advocacy, which is composed primarily of parents and professionals, but rather to supplement it.

I prefer to think of self-advocates as vanguards of the community — they share a common situation and condition along with the rest, yet are able to represent themselves and their fellows in issues concerning their sector. Like guard-dogs, they remain loyal to the cause, yet stand up to those who oppose the cause, as well as being on watch against any wrong move made by anybody, whether they are within the community or outside it.

However, the main premise that some mainstream advocates use in undermining self-advocacy, particularly in the developmental disability sector, is that able and willing self-advocates form a “minority” of what is already a “minority,” and that the needs of the majority is of more significant importance. One scathing critique claims that we self-advocates are not putting ourselves in the shoes of those with severe and profound cognitive impairment, let alone those of their parents and caretakers.

And that brings us to a brand of self-advocacy some mainstream advocates would prefer to further: people on the spectrum who are trained to be spokespersons and diplomats, whose messages are less aggressive and are those coming from the mainstream, with little or no regard to our actual needs and only focusing on the agenda of some parents or professionals. In other words, I’d like to call them “mouthpieces.” Or, to be congruent to our current comparison, these so-called “self-advocates” are like lap-dogs, who are constantly petted by their sponsors, and respond to every order given them, with no questions asked.

Do you stand up for your rights, or let others speak on your behalf?
Do you stand up for your rights, or let others speak on your behalf?

Now, I expect some would tell me pretty soon, “We’re not telling them what to say or do; we’re just guiding them in what they should say or do.” I’m aware of the CRPD’s clauses on supported decision-making, especially those with limited cognitive abilities, but then again, there is a fine line between support and actual manipulation. That is something anyone mentoring potential self-advocates need to watch out.

* * * * * * * * * *

I’ll expound more on the above premise in upcoming posts, but now, let’s discuss the roles I portray in the wider community. Or, as I like to call it, the hats I wear.

Right now, I wear the BigBro hat. I also have the ASP hat, one that I wear when I practice my role as a chapter leader and a member of the Autism Society Philippines. I also wear a Designer hat when I make designs for clients. I’ve got a myriad of hats that I’d rather not discuss here, since they are irrelevant anyway, but simply put, I can be a Jack of all trades when the need arises.

Some have told me to stick to one hat, one that identifies what I really am and what my brand is. To be honest, I’m just like anyone else — I have to be a son, a brother, an advocate, a teacher, a friend, a servant, and a leader. I can’t be everything, but I have to be someone at a time. And I would rather prefer to keep everything separate, and when I mean business, I don’t mean personal.

* * * * * * * * * *

Still to come this June: my recounts during the 10th Parliament of Youth Leaders held this May, as well as some insights I have gathered during talks with other self-advocates from my exploits abroad.

To keep you expecting, here’s a photo of me with Senator Bam Aquino during the 10th NYP:

Senator Bam Aquino and me during the 10th NYP
Senator Bam Aquino and me during the 10th NYP

Until then, cheerio.

Autistic BigBro

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