Saturday, September 19, 2009

The Hub and Ideas

I am going to start by offering a bold premise; there are other good autism information groups, but nothing else that blends science and advocacy as well the Hub. I say this not to assign a “good job”, gold star to the hub, but simply to recite a fact. I feel comfortable recommending others to the hub when searching for basic or advanced autism information. This is not a privilege I extend to other places or groups; even one’s who claim good science or advocacy.

So, it is an honor to write a blog included in the hub and yet…. It also is not. I think the “honor” is in the quality of our thinking and writing, it comes from us. It is not implicit; it can diminish or even go away entirely. The seeming goals of Hub; namely, the countering of bad autism science and promotion of autistic rights might be worthy goals, but not enough in themselves. I suppose then you could say that I find the Hub honorable, but only as long as we behave honorably. We behave honorably by neither sacrificing science, nor losing our strong ethical base. Also, by keeping our logic intact even on difficult issues and by carefully explaining in such a way that teaches others and not merely engaging in drive-by ethics or the scientific, intellectual variant of schoolyard bullying.

To challenge and substantiate, that is the direction I want to see us take….. and largely, we do.

Since its founding in 2006, the Hub has only gotten bigger. I swear, it almost seems impossible to keep track of all the newly added blogs. And with this expansion have come new faces, new ideas, and sometimes more disagreements. Sometimes I almost feel, as if I wish the Hub would go back to the originals. But not really…..

I think it was always the intention for the Hub to grow, and even important…. maybe even inevitable, that it do so. I also think that the neurodiversity movement, as it pertains to autism, to still be in its tumultuous childhood. This is in spite of it being at least 15 years old and the broader disabilities rights movement being older still. I think because this movement is still developing there are questions yet to be formally answered.

I am also going to offer a prediction. I predict that these questions below will not spontaneously go away. And that they will persist and be a continuing source of conflict among various persons in the hub (and not just a few individuals).

1. What constitutes respectful language toward autistics on the Hub.

2. To what extent is intra-Hub debate permissible, on what issues, and by whom?

3. To what extent is criticism of the Hub’s general direction permissible?

4. To what extent is one obligated to deal with unscientific or unethical comments that appear on one’s blog?


5. What are the goals of the Hub, stated more specifically than they are now?

16 Comments:

Blogger Adelaide Dupont said...

1. Whatever the person chooses to use about themselves and others is respectful language.

2. Debate is permissible in scientific concepts. It is less tolerated on the personal level.

3. When the general direction harms the people in and on it or has the potential to do so.

4. Call them on it the first time. If they don't respond, then moderate them. Make a message to the other commenters that if they see a comment like this they can tell you.

5. I don't know for right now.

I have been reading the Hub since the first day of proceedings with an exception of a break from late 2006-early 2007. I think your questions are very valuable.

10:42 PM  
Blogger Anemone said...

I have an ethical concern about autistic adults posting on the hub. If the hub is about blogging about autism, then I think the autistic bloggers run the risk of becoming professional autists, rather than autists who have something to say at times about autism, as well as lots to say about other things. And by that I mean that pressure to blog about autism may put people at risk of going off balance, as well as jeopardize their privacy. I wonder if any of the autistic bloggers have come across this issue in their blogging? I think the balance may be tricky.

The reason I bring this up is that every time I think about blogging about autism, as opposed to the few essays I posted on my website earlier this year and last year which I have no intention of adding to, I feel like I'd be prostituting myself, or "pimping" my autism, rather than being a whole human being. It scares me. It doesn't feel safe. I don't know if this makes any sense to anyone.

Has this come up before?

11:16 PM  
Blogger jypsy said...

Not all autistics on the Hub blog about autism.

5:40 AM  
Blogger Autism Reality NB said...

Funny post. Was it intended to be?

7:04 AM  
Blogger Interverbal said...

Hi Anemone,

I am sorry, I do not have answers to your questions. I hope others see them and are able to answer them.

11:06 AM  
Blogger Interverbal said...

Hi Harold,

No, I am all for humour, but this one was meant to be serious.

11:07 AM  
Blogger Anemone said...

Sorry if I came across as too intense. I'm just a little confused about what is expected of autistics who blog here, and how that affects them. If autistics aren't expected to blog on autism at all, then no problem. But then how do you choose who blogs here? And why?

11:12 AM  
Blogger MJ said...

Interverbal,

I mean no offense, but if you think that the hub is a good source of information about autism you need to get out more. The hub has no shortage of strong opinions, which I guess you equate with advocacy, but when it when it comes to accurate information about science it is one of the last places I would look.

From my experience most of the hub members are anti-treatment and anti-cure and, when it comes down to it, don't treat autism as the disorder that is is. It might make you feel better to indulge people who think that autism is nothing more than a difference to be accepted but that is not science and it certainly is not in the best interest of those who have autism. Accept them and treat them as people (as you should everyone) but treat the disorder.

In my opinion, the best source for information about the science of autism is pubmed.

2:15 PM  
Blogger Interverbal said...

Hi MJ,

"I mean no offense"

None taken, there is room for disagreement here.

As to myself, I would like to keep focused on the questions I posed rather than dealing with broader concerns with the Hub right now. Maybe in a later post we can take that up.

6:36 PM  
Anonymous Amanda said...

Anemone -- what bothers me is that every time I post about something that isn't autism-specific (which is very frequent), everyone assumes it's autism-specific, and everyone thinks that I think of myself as an "autism blogger" (which I don't, my focus is much broader than that) just because I'm on the hub in the first place.

And the other thing is that when I do blog about something that sounds autism-specific, often I'm doing so from a perspective where it's only one example of something that happens in a much broader context.

So I don't think it's really possible to tell by looking all the time, how much of that a person is doing. I tend to avoid thinking of things as if autism is the center of the universe, and I always get surprised when people assume that it is to the extent that they do when reading my writing.

7:35 AM  
Blogger Clay said...

As the Hub's newest blogger, (thank you, everyone), I can assure you that I intend to take advocacy seriously, although I have to admit my blog's going to be short on the science. To quote Dirty Harry, "It's a good man who knows his limitations." I can only offer stories of my life, in which autism may be incidental, and probably secondary to the far more disastrous effects of being born into such a dysfunctional family.

Now retired, I don't know that anyone is ever going to understand or appreciate the many obstacles I've overcome to reach the Life of Riley I now enjoy. ;-)

11:59 AM  
Anonymous Anonymous said...

*speaking very gently here*

"as long as we behave honorably"

What is 'behaving honorably'? I'd say that's extraordinarily complex and when you add disability rights and autistic rights into the mix, 'behaving honorably' might well mean something different to a disabled advocate than to, say, a professional ABA therapist. In fact, for me, the words: "behave; behavior" have become so loaded we don't even use them in our house anymore. And, really, who is to judge the honor of another? That is something only each of us knows inside ourselves.

1:56 PM  
Blogger Interverbal said...

Welcome Clay!
/mumble (about time too!)

5:14 PM  
Blogger Interverbal said...

Hi Anonymous,

"What is 'behaving honorably"

As stated in the post"

"We behave honorably by neither sacrificing science, nor losing our strong ethical base. Also, by keeping our logic intact even on difficult issues and by carefully explaining in such a way that teaches others and not merely engaging in drive-by ethics or the scientific, intellectual variant of schoolyard bullying."

You say:

"'behaving honorably' might well mean something different to a disabled advocate than to, say, a professional ABA therapist."

All true, although certainly I am writing from my perspective. Really, I have no problem if you would like to trade out the term I used for another. I don't consider it important.

Also, just as a note, I am a behaviorist philosophically (and by education), but I am a special education teacher by profesion.

"And, really, who is to judge the honor of another?"

We all have that right I think; especially in the specific, defined sense I used it.

Thanks for hopping by.

5:45 PM  
Blogger Anemone said...

1. Each blog will have its own rules.

2. Debate on the issues, not on the people, phrased as "I think" or "this is what happened to me" or "this study found", etc.

3. Everyone has an opinion. I'm more curious as to where this debate would occur. It would be useful to follow and see where things are at and where they've come from.

4. I think each blogger should decide for him/herself what they want to deal with and what they can handle. If the comments are too abusive, and they leave them posted, they will lose some readers. It's a trade-off.

5. This is something that has always confused me. I think we'd all like a place to link to us but with no obligations for us to post on any particular thing ;) . Is it a place for people with common values and issues to find each other (which could leave things wide open as far as blog content), or is it a only place for people who blog on particular issues? If it's the first, you could include a lot more blogs, just so long as they met certain standards with respect to respect (and critical thinking?). If it's the second, I don't know.

1:37 PM  
Blogger Joseph said...

PubMed is an excellent place to find science-based information about autism, as MJ suggests, so long as you don't go there to cherry-pick data, and you can tell the better studies from the not-so-good ones.

What PubMed doesn't give you is summarized information that can be digested by the average person. You won't find a debate of the relative merits of data, some of its possible limitations and so forth. You can't post comments on PubMed that say "well, the authors failed to considered this and this."

The Hub also has a lot of writing that is not science-based, which is good.

The greatest merit of the Hub, perhaps, is that it doesn't have conspiracy theorists.

4:01 PM  

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