Advocacy - It's Complicated (part 2 of 3)

(continued from "Well, Now They've Done it" )

Ok. I've decided this will have to be 3 posts in order to separate the main issues out and keep my brain from exploding.


 The interaction between Zoe and Robert over his blog post also spurred a discussion of advocacy. Specifically, self-advocacy vs parent advocacy. If you managed to get through all of the comments on both posts, you'll have seen how this evolved.

The editors at TPGA (Thinking Person's Guide to Autism) decided to use this interaction as the focus of a "dialogue" that they set up, supposedly in order to give Zoe and Robert a chance to discuss their perspectives a little more, and also for everyone else to read and learn, and hopefully find ways to hear each other - presumably the goal being we understand each other better, leading to more comprehensive advocacy in the end. There is more involved, and the specifics of that situation and its aftermath, will be the focus of the 3rd of these posts.

But for now, I just want to talk about advocacy. Much has been said and argued over by parents - both disabled and non-disabled, as well as disabled adults, primarily with diagnoses on the Autism Spectrum. I agree with many points that have been made on both "sides", though I really dislike putting it that way, there doesn't seem to be a better option. I also disagree with many things that have been said, again on both sides of the various points of note.

Part of my struggle when deciding to write about this is that my knee-jerk reaction was to respond to each and every thing I had read that I found offensive or disagreed with.

I'm not going to to do that.

My lightbulb moment came when I realized it doesn't matter. It doesn't matter if I think what so-and-so said in this comment is the most insanely ridiculous or ignorant thing I've ever read.

The heart of the issue is the topic itself, which is bigger than any individual comment.


Advocacy is not a simple concept. You might think so on the surface, but it's really anything but. There is a very fine and unforgiving line to be walked when you are speaking up and out - the other side of which is rather large label slapped across your forehead that says "troublemaker". Or "annoying shit disturber". Or "whiny entitled brat". Let's not forget about the old favorites "overly sensitive" and "crazy".  And trust me, once that sucker is on there, it's bloody near impossible to lose.

And this happens to both those who can advocate for themselves as well as those of us who advocate for someone else, there is no discrimination there - I know that many self-advocates will argue with that but from my own personal experiences and others that I know, I can tell you that it happens pretty evenly across the board.

And I guess that is part of my problem with some of the discussion that has been occurring lately - this is not a contest. This is not about who suffers more, who should have more say, who can do it better, who has a right to do it or not, etc. Again, likely drawing immediate reactions of "she's missing the point!" from a lot of people, it actually, really, isn't. As I mentioned in the first post, as soon as you start assigning degrees of import to certain groups, individuals, voices, or disabilities over others? People lose. It's inherent to that kind of subjective judgement.

Yes, I absolutely, wholeheartedly and unfailingly agree that those who ARE disabled, should be heard if they can be.  And heard by everyone.  But it also needs to be understood that you cannot assume correctness simply because the person speaking is disabled. To me that's like saying every politician is right about whatever they have to say about politics, because they are the politicians, we're not. I don't think too many people would buy that and I don't buy it in this situation either. Everyone has a right to be heard, but there still needs to be objectivity regarding what is being said.  We're all still human, we are all still going to have our biases and emotions and judgements. And we all make mistakes.

**just a side note - I think from reading through everything of the past week I am now hyper-paranoid about what I say, because my immediate thought after typing "if they can be" is that I will be pounced on for suggesting that there are those who cannot... as there are some who will argue that everyone can be heard, regardless of their cognitive abilities or impairments. For the record, I refuse to get in to an argument with anyone over the literal absolutes when defining "advocacy".  We are not talking about the ability to indicate preference in some basic way, such as Toad saying "NO!" when offered a fruit or vegetable of any kind. While technically you can say that by doing so he's advocating for himself, this is not what we're talking about here and I hope that's clear. **


But again, expanding on a point from the previous post, advocacy, and effecting change, making things happen, is about numbers. In fact, it's ALL about the numbers.

If you look back through history, you won't find any significant movement that accomplished their goals without numbers on their side. And when I say numbers I'm talking about the actual number of voices you have working together on an issue. They key word there being together.

The fact of the matter is, advocacy is like a Facebook relationship status rolled in to a Google+ circle. Yes, I'm serious.

Like this...


Advocacy is single.  Whether you are a disabled adult, or the parent of a disabled child, or disabled yourself AND have a disabled child, this will be your primary status. There are and always will be battles you have to fight on your own and at least in my experiences so far, these far outnumber the ones you have allies for.

Advocacy is looking for friendsPretty much always. Intrinsically we know we can't go it alone even though often we feel like we have to. There is always the search for those who can relate, empathize, support, listen, advise, add their voices if possible.

Advocacy is looking for/in a relationshipMore than just friends. Formal groups or organizations that you can support and/or join to work with actively. The numbers are bigger, these voices are louder because of that.

Advocacy is interested in networking.  As individuals, this is looking for friends. As groups, it's networking. Organizations specific to various disabilities can network together when it comes to common goals. Even bigger numbers. Even louder voices.


But here's where the circle comes in - we can be any one, all, or some of these statuses at any given time and our circle is always moving.

One thing remains constant though. The voice is important. Yours alone, whether you're a parent advocate or advocating for yourself. Your child's. An organization, a network, a lobby, a council, a committee... what have you. Use it if you have it.

Advocacy is ... it's complicated.  Don't get me wrong, I'm not so ignorant or simplistic as to suggest that there is really no difference in the voices. Of course there is. The problem lies in that there are so many different disabilities, and levels of ability within them, as well as a significant population that cannot advocate for themselves for a myriad of reasons, that once you start arguing over who is more important, who has the right and who doesn't, who knows better than whom, who has privilege and why or why not, you lose sight of what you're doing. The movement toward change loses steam because we were too busy fighting amongst ourselves to stoke the engine.

It would seem to be simple common sense. Back to my first post again (hey, there's a reason they are tied together!), it's a matter of respect and decency toward others. Listening, from ALL sides. Understanding when you're trying to fit a square peg in to a round hole (ie. parents advocating for their minor children vs disabled adults advocating for themselves) but also understanding when the peg and the hole start fitting together better (ie. a disabled child transitioning to adulthood and self-advocacy, if possible).

Because of the variations within the disabled community, there will always be different goals, different battles to fight, we aren't all going to be focused on the same things all the time. But there is certainly common ground, and the more people standing on it, the better.


It's sorting through the differences to find it that seems to be the hard part.



I'm not sure if that made any sense. But there it is, for what it's worth.