Saturday, June 2, 2007

Advocacy, Leadership, Fellowship

There has been a discussion taking place in the halls of the Autism Hub over the last few days. For most of us I think this discussion has been .... uncomfortable, to say the least. The earliest comments of the debate were here on my blog, coming from Larry (Laurentius Rex), an autistic man who is a long-time Hub blogger, autistic advocate, and board member of the NAS in the UK, among other things. After our brief discussion, he posted this entry to his blog. This led to the most intense aspect of the debate, which took place here. Since then, many Autism Hub bloggers have posted their thoughts on the issue, which has turned somewhat acrimonious. I'd like to offer my two cents on the topic.

Let's start with a definition:

active support of an idea or cause etc.; especially the act of pleading or arguing for something

Advocacy seems to be at the heart of the issue. In my view, advocacy can take many forms. One manifestation is when a member of a community/class/group/race speaks out or otherwise takes action for the betterment of his group. Another is when a individual does so for himself (self-advocacy). Another, simply by definition, is when a community/class/group/race is supported by someone outside their own boundaries. Needless to say, there are many other forms of advocacy - an almost infinite number, to be sure. One primary point being discussed in this debate is; Who is qualified to advocate for autistic people? I think, based on the comments I have seen, that everyone involved in this discussion agrees that autistic people are most qualified to advocate for other autistic people. By saying so, I am not indicating that I feel non-autistics are incapable or should not advocate for autistic people. As strong (if not stronger) an ethical obligation exists for a parent to advocate for their young child as exists for an autistic person to advocate for their community. I see it as in no way inappropriate for thoughts originating from parents of autistic kids and autistic adults to coexist peacefully on the Autism Hub. I do, however, acknowledge that Larry is making a very important point, and perhaps the main point of the entire debate/discussion: Whether or not the Hub is where it happens, autistic adults need to not only self-advocate, but advocate for the entire population of autistic people loudly and strongly. Which leads me to my next definition:

1. the activity of leading; "his leadership inspired the team"
2. the body of people who lead a group; "the national leadership adopted his plan"
3. the status of a leader; "they challenged his leadership of the union"
4. the ability to lead; "he believed that leadership can be taught"

Please notice, first of all, the the definition of leadership implies the following applicable characteristics: Activity, status, and ability. While all of the autistic adults who I have read and enjoyed communicating with (mainly via the Hub) have all of these prerequisites, most any child does not. Much has been commented in regards to parents "speaking for" their kids. I submit that, until a certain age, parents are morally correct and morally obliged to do just that. We must provide leadership in the form of role-modeling, inspiration, motivation, fulfillment of basic and complex needs, etc. to our kids. Then there is leadership in the autistic community. I have yet to see an example on the Autism Hub of an NT parent attempting to take a leadership role that supersedes input from autistic individuals. The very fact that our voices exist on the Hub, and on certain days and on certain topics may be louder than those offered by our autistic fellows on the Hub, in no way indicates that there is an attempt to "hijack" (to use Larry's word) the Hub from autistic people. I am working hard to not feel offended by the implication. I will assume, unless told otherwise, that Larry's position on this assumes a lack of intent on part of the parents to drown out autistic voices, that instead Larry is advising that we be cautious that the contributors on the Hub do not become so imbalanced that the autistic bloggers become displaced.
One message my wife and I plan to communicate carefully to our son is this: Being autistic does not entitle him, or anyone else, to preferential treatment. It is his god-given right to fight for equal treatment. There is a difference. And I, for one, hope that my presence on the Hub does not work to the detriment of the equality of all contributing persons. If I were convinced it was doing so, I would cease immediately. Otherwise, I plan to continue on. And I plan to do so in a spirit of Fellowship, which is my last definition:

fel·low·ship (fěl'ō-shĭp') n.
The condition of sharing similar interests, ideals, or experiences, as by reason of profession, religion, or nationality.
The companionship of individuals in a congenial atmosphere and on equal terms.
A close association of friends or equals sharing similar interests.

This is how I view the Autism Hub in its current incarnation - a place of Fellowship. On the home page is the following "Mission Statement":
"Autism Hub promotes diversity and human rights, with ethics and reality as the core guiding principles; aspects include empowerment/advocacy, acceptance, and a positive outlook."
I see no cases where this mission statement is violated, by any contributor to the Hub.

My summary is as follows: If all of us who enjoy the benefits of having a place on the internet such as the Autism Hub can act in the spirit of Fellowship, understand that there are many aspects to the issue of Advocacy (all of which are valid and acceptable), and let the autistic people who choose to do so provide Leadership, I think we all will be better people for it.


laurentius rex said...

Fellowship, Ok that'll do me, like the Lord of the Rings,

Elves, Dwarves, Hobbits and Humans, together against the forces of Sauron and Saruman.

laurentius rex said...

And of course it had to be a Hobbit who finally destroyed the ring :)

Ballastexistenz said...

See, I'm always uncomfortable with a lot of what goes on on the Hub.

And I bet Larry is too (some of it will overlap with me, some won't).

I don't think either Larry or I have a notion of the right to be comfortable. I know I don't.

And then a lot of people have been comfortable all along, including with stuff they should've been uncomfortable with.

And they're going "Now we're uncomfortable, shame on you Larry for pointing this stuff out" basically.

Which underscores the need for the discussion in the first place, since now a whole lot of the discussion has been poured into assuaging their discomfort and reassuring them they're all okay or good people or something rather than discussing the issues.

Another Voice said...

The mission statement you just quoted was not present on the HUB on Friday. Nor were fellowship and equality.

It was, in my estimation, all about control, under the title of leadership. I was sorry to see Kevin having to take the brunt of it. Even he finally put the keys to the HUB on the table.

I have said before that when I first found Kevin’s blog and the HUB it was like a breath of fresh air. The way I saw neurodiversity defined and used on Friday is not something worth pursuing, my opinion only.

Steve D said...

Larry - It's funny, I can't read the word Fellowship without making an internal Tolkein reference either. To extend the metaphor, if you are the Hobbit, then I must be the....

Amanda -
Thanks for your comment. I am a relative neophyte when it comes to issues of autism advocacy. You, on the other hand, have years of personal experience to bring to bear (as does Larry). You mention things that some Hub members "...all along, should've been uncomfortable with." What, specifically? When I use the term "uncomfortable", I am attaching negative feelings to it. Are you also, or are you using it to reference a more neutral state such as 'cautious alertness'?
For me, its been uncomfortable from the standpoint of understanding that I may have unwittingly been either offending, displacing, or hindering the progress of a group that I like and admire very much. This has been a learning experience for me, ever since Larry's first comment a few days ago. I don't want to squander it.
It has also been uncomfortable because some other people who I respect and like very much have clearly been deeply offended in the process - good people who frankly don't deserve it in my opinion.

Camille said...

From what I can see what Larry has written is mostly very mild, except what he commented on Kev's blog which went over the top (to me).

Calling Kevin an ice pick assasin was so over the top, it goes way beyond acceptable even for an iconoclast and berzerker/brickbat tosser.

Larry is just stinking dead wrong that neurodiversity has been too much an issue about mercury. WRONG Larry. WRONG.

I can see where there may be a overly-parent-centric problem on some hub blogs, and that can be discussed, even with some rudeness. In my opinion.

Someone else complained that Autism Vox should not be called Autism Vox.

I think Kristina's blog is stuck with that name even if it is misleading to some. We can deal. It's not like she intended to be offensive and she has tried explain that she didn't mean to claim that she is the voice of autism.

Neurodiversity's definition is whatever it is at the moment and no one gets to own it. No one gets to own the definition of love either (in English) or any other language.

Larry can say that neurodiversity has been taken over by NTs or whatever. That's his opinion, it doesn't mean that he's right. He's just Larry with an opinion. Just like me, I'm just Camille with an opinion and we all make our case and whatever gets picked up by the masses is what gets picked up by the masses.

We can try to direct it, but ultimately it is whatever it is.

It would be good if all the parents would take time to update themselves on autism advocacy history and disability rights history to get some perspective on what Larry and Amanda have been doing for years. That's only fair and smart. In my opinion. I don't think it can be forced on anyone.

Larry (and others) could blog several times his (their) history of acting within disability rights movements (organizations, whatever) and that would help more people would get a broader view of what's been going on before they showed up.

There are some raw nerves out there (among autistic adults) about autistic adult voices being silenced (brutally) and that needs to be understood and respected and even "enforced" in some cases, if I may be so bold.

That's my take, so far.

Jennifer said...

Thank you for this post, Steve.

It was very painful for me to read the comments on Kev's blog on this issue. This is, however, an important, albeit painful, discussion.

I agree completely, as you have stated Steve, that autistic people are most qualified to advocate and speak for other autistic people. What most disturbed me in the comments is Larry's contention that Kev's (and other Hub members') fight against mercury=autism has somehow damaged the image of neurodiversity, and that moreover, this is the fault of the Hub. Here is part of what Larry said; "some of them like Lenny and John Best are outright malicious for sure but sometimes I think the way the arguments have focused too much on mercury has led to an increase in the divide and a hardening of positions on both sides, it has not led to a clearer exposition of neurodiversity." and "Yes this section of the internet, hub call it what you will is misrepresenting neurodiversity to the opposition because “we” are not representing a wide enough spectrum of neurodiversity and have allowed the impression to proceed that neurodiversity is about autism only and that the creed of neurodiversity is only to prove that mercury has nothing to do with our being here."

I cannot accept this. The fight against autism=mercury is not just a theoretical concept. Real children are being held down and injected with Lupron right now. And thousands of others are being woken in the night to have chelating agents stuffed down their throats. This is something that is urgent to deal with. Not just because of the torture of those innocent children, but because there are so many parents that are imparting a terrible message to all autistic people - you are broken and need fixing. These parents are trapped in the "anger and blame" stage, and cannot move to the acceptance stage. They are trapped there, not because of love for their children, but because of false science being fed to them by the likes of JB Handley. If this is not countered, and the parents remain in the blame stage, then not only do we lose the opportunity to have those parents rightfully advocate on behalf of their children, but much more importantly, we subject the children to years of negative vibes from their parents, and lose the opportunity to have un-emotionally-damaged autistic children grow into autistic adults who can advocate for themselves.

Larry is wrong to lay blame at the feet of Kev and other Hub bloggers because others have misrepresented their efforts to bring real science to the attention of these parents. I know from my own experience that it is very common for parents in the blame stage to state "If you are not in favor of our particular treatment, you must be in favor of letting children rot". This false interpretation cannot be avoided by simply having more autistic people speak the truth.

Camille said...

I'll just add to Jennifer's comment that kids are having harsh chelators inserted up their rectums, at night, too.

Not talking about the mercury idiocy is a betrayal to those children. I could make the case that Larry does't care about those kids if he's not blogging at all to expose the biomed garbage. I won't make that case because one needs to have some specialized knowlege to speak to why it's wrong. Not everyone can do that.

I will continue to do it as long as I can. More kids may be killed even in the UK by the biomed parents and the quacks. That's the truth. They are being harmed right now.

Steve D said...

Camille and Jennifer -
My sentiments exactly. This one of the things I meant in my post by "other forms of advocacy". I intentionally avoided mention of it specifically to keep the focus on my overall point, which was that I envision an Autism Hub wherein all viewpoints, regardless of the source, assuming they are helpful to the cause of autism acceptance, are accepted and given careful thought.

laurentius rex said...

I was not wrong about sending out the ice pick assassin was I, it seems I was being prophetic.

No I did not accuse Kev of having that intent, it was just another animal farm reference, for if you followed the Animal farm link you would see where the analogies were coming from.

I picked up the Animal farm theme from Joel and ran with it. For what it is worth in my postings you should notice a note of self criticism where I talk about myself as the pig with two legs, a reference to my concern about becoming indistinguishable from what I stand against.

As for Kristina, that is an old story and goes back to March 2006.

I had used referential language which I am sure Kristina could decode in reference to her own paper. A paper that was submitted to an open conference, as was mine, in order for it to be the subject of debate and criticism.

I think people are really missing the point, and maybe I have miscommunicated, sure my style is a bit opaque at times, but although it would be arrogant to associate myself with the wisdom of Socrates, but again if people read my blog properly they and most certainly Kristina will have got that reference, that Socrates was executed because he said unpopular things, but that his intention had only been to sting Athenian society out of it's complacency.

Chuck said...

If there are so many autistic adults, then what do they advocate for? Who do they feel best represents their views? Do they align themselves with neurodiversity and autism hub views or not?

Anonymous said...

Great post!. Dr. Blaylock has some interesting views on this topic.