Valerie Foley

You think?

In Environment, Medical, Parent issues, Research on January 14, 2013 at 10:46 pm

On the weekend, in response to my post about vaccine research, I was well and truly confronted on Facebook.

I hadn’t really seen this kind of stuff before, so I tried to handle it rationally. Probably a stupid move. Slightly stupider than thinking you can mention vaccination and not be hit with a wall of bile.

Let me see if I can make sense of any of it.

Two things happened, so far as I can see, in the name of vaccination.

The first was statements from autistic adults stating their (pro) vaccination views and claiming that being interested in vaccine safety was a sign that autism parents do not value autistic adults.

The second was being targeted by a FB pro-vaccination group (you can follow them through their link posted in the discussion, if you wish. Link below).

But really… what’s behind these two things is what is worth considering.

I’ve met plenty of people who disagree with me (real and virtual) but I’d (mistakenly?) assumed they were not hateful in the literal sense.

The eye opener for me is that there are actually real people (and lots of them) who sit at home, at their computers and search for people who think differently to them about vaccines.

I’m led to believe vaccination isn’t the only issue that invites this activity, but it’s a clearly a favourite.

They tag each other in comments to call each other into discussions. In those discussions, they repeat their own points of view (as though no one has ever considered them before) and link to their favourite websites (as though no one has ever seen them before). Then they retreat to their FB pages (and forums, I guess) and discuss how stupid the people they have been ‘informing’ are for not listening/understanding/changing their point of view.

I am glad I made it this far without seeing this ugliness before (Oh, hang on… there was high school…) But yesterday, I saw it up close.

Read it here, if you like. Take special note of the way pro-vaccination advocates take advantage of autistic self-advocates to further divide to autism community. Classy move. Because there isn’t a big enough set of communication difficulties between autism parents and autistic adults over issues of health.

I’ve shared my own thoughts about this many times, and know that the discourse that makes meaningful change in this world has moved well beyond simplistic standpoints. If it helps self-advocacy groups, or anyone else to think this way then, great, but there are issues wider than autism at play here (in my mind, at least).

I am yet to be contacted by an adult with epilepsy and told that I am a bad parent for admitting epilepsy is a massive medical challenge. No adult with megacolon has emailed to say it’s a wonderful asset to a person’s life and shouldn’t be treated.

These conditions do not make a person, any more than autism makes a person, in my opinion (and no, I’m not autistic, and yes, I have an opinion on autism. I’m a woman and have valid opinions about men too. Shocking, I know…)

Do I think any of these conditions make a person less? Of bloody course I don’t, but they often make a person very sick.

Obviously, if you are an adult with any of the conditions my son has, and you happen to think differently to me, you might feel a bit miffed. Feel miffed, by all means. But do me and my intelligence and experience a favour and accept that I, have very good reasons for my perspectives. Just like you do.

My reasons are very simple.

I don’t care if my son grows up to be 18 foot tall and covered in tin foil. I just want him to grow up. I want him to live a life that has as much possibility as possible.

That’s it.

No reverse advocacy about autism or epilepsy or giant colons. No aspersions about anyone who lives with any of these conditions. No slogan t-shirts slamming anyone.

A parent wanting her child to be healthy. That’s it.

Chronic illness is (for us) disability. It’s lifelong, and there is less evidence our son was ‘born with it’ than that it was induced in him.

I completely understand it might seem, to an autistic person, that people are saying slow down the autism rate so there are no more people like you. But I believe they are (and I am) saying something very very different.

I hear people saying, children are being disabled unnecessarily, by deliberate acts of environment, lifestyle and public health. And I agree.

Some adults with autism may not feel disabled, and may well be entirely happy with their lot… and that is brilliant. But as a human being, hand on heart, I am saying I want my child to have a chance to be healthier than this, if it is at all possible. He is not well, currently. He started off pretty well, we did stuff on the advice of our doctors, and he got sick. Even the doctors agree it should be better than this, and that we are not alone.

Autism (epilepsy, megacolon, transverse myelitis etc etc) may not be illness to some other people, but it’s illness for us. It’s debilitating illness. The thinking differently, is great. The bonus skills are awesome. The boy he is, is truly mindbogglingly terrific. The vomiting, seizures, self injury, the constipation and reflux, the paralysis from auto-immune attacks… they are debilitating.

In my opinion, we are throwing a generation of babies out with the bathwater if we ignore the seriousness of all aspects of this. The vaccine issue is one of those aspects.

However, this is what I think. Legions think differently.

And they can read anything into anything I say. Anything they want. And they do, regardless of what I say or where I say it.

So, I guess… If it makes you feel better to think that lots of people like me are sitting around wishing for some kind of neurological genocide, or wearing ear muffs and eye masks every time autistic (or epileptic or constipated) people open their mouths… then make that choice.

But it’s not what’s happening, from here at least.

However… yesterday’s activity had nothing to do with anything resembling neurodiversity (except for the opportunistic barrow pushers hiding behind autistic adults to back up their position).

It was about ideological fundamentalism.

You think differently to me, so you are wrong.

Only the first part of that last sentence makes sense to me.

In my mind, this blog is about information. I am a parent sharing medical information that I find interesting, that relates to autism. It’s not universal truth, it’s stuff I find interesting. If you don’t find it interesting, move on.

In my mind, my views are my business, yours are yours. You can discuss them, ad nauseum, in other places, as can I. Online arguments have no actual meaning or positive effect, in my view. They are like a blindfolded game of catch.

I can, and do seek information from all kinds of sources, and am not doing this to have my eyes opened by anyone. I can do that for myself, and when I do, I will still disagree with heaps of people.

Also, surprisingly, I do not rate random strangers berating me as a solid method of information acquisition.

If you choose to distribute information from here because you love it, or because you hate… it is irrelevant to me. If you ignore it, is also irrelevant.

But if you hijack it, for your own divisive ends (and to privately or publicly discuss how stupid I am)… it’s pointless, cheap and childish…

It will not change anyone’s mind. People are not that stupid. It will make you look like a clever hero to your like-minded friends, and if you need that, then by all means, go for it. And, to make the FB page a nicer place to be, you’ll be blocked, freeing up your ability to go vent somewhere else.

We think differently. Big deal. We live different lives. Big deal. We have opposing agendas. Big deal.

The lack of sophistication involved in thinking that people who think differently to you are inherently stupid and need to be educated is truly astonishing to me. But I guess it’s what a history of conflict is built on.

The one thing I don’t get, is the vehemence.

I know what motivates me. My child. Other children. The overwhelming message delivered again and again that we are doing something very, very wrong and we need to rationally, safely and carefully work out what.

But, if the status quo is working fine for you, then… what in heaven’s name do you care about people who think differently? You’ve got the status quo. Enjoy it while you’ve got it.

Why the character assassination? Why the truly toxic assessments of people’s souls (really… go read it in the links off my FB page) and why in the name of all that’s rational, why Amanda Peet?

Really?

Amanda Peet?

I’m sure she’s a lovely woman in her own life (I have absolutely no inclination to think one way or the other), and I’m not judging her at all, but… really?

That’s your hero? That’s who I’m supposed to listen to?

Think I’m being unfair?

Maybe I am. I don’t know a thing about her, except that she makes bad movies and she has strong opinions about vaccination.

Which is, precisely what yesterday’s strong minded posters know about me. Nothing. Except I make kids TV, not movies.

And sometimes it’s quite good.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: