Since Everyone is Posting About Voldemort Speaks

What follows is a comment I made on a blog. In my usual way I got to the end and then thought hmm that’s long enough to be a blog post so for once I am going to actually post what I said. I apologize to regular readers as it is repetitive of things I have said here in the past. My opinion of this group has not altered much since their founding.

I didn’t want to ignore what went on today as far as either their attempt to further monopolize the debate or on a much happier note my autistic peers rallying to oppose them. Perhaps if Voldemort Speaks didn’t so totally dismiss autistics they might have wondered about the wisdom of meeting the night after the Autistic Self Advocacy Networks gala. They were concerned enough to bring it the DC chief of police the night before but he thankfully was not one who shared a vision of what is in the US a constitutional right of freedom and assembly being violated.

20 years ago I hoped that the internet would improve the whole experience of autism for the next generation of autistics. It has. My own ambitions for it back then were small. I hoped it would be less lonely, that people would know the joy of being with like minded people and so on. That a protest could be put together pretty fast and celebrated the world over was not even on my wish list. A huge thank you to those who spent precious energy and coping skills to put it together, to anticipate obstacles, and to be there.

Thanks also to every parent ally who cheered not only the protestors on but many autistic voices out there.

So on to my comment I guess. I could have written something fresh but my comment was more than long enough. I suppose I seldom make brief ones.:

My own experiences with my own autism have been no picnic. I don’t really believe in high and low functioning because depending when in my life people were deciding that I have been all over the place and I know I am not alone in that. Things looked bleak for quite awhile then better then bleak and repeat.

I don’t question for a moment the anguish my own mother felt throughout my lifespan. That would have been the case though if I were typical as well. The only real difference is since I wasn’t there were no shortage of people painting out my life in broad brush strokes. No one would have tried that for my siblings.

I had a lot of trouble actually accepting my autism since it was until my arthritis got worse pretty well the only thing I couldn’t just triumph over by sheer force of will. I thought of it in pretty much those terms for way too long. Even when I went with the Star Trek model of being like Data it was unhealthy as  didn’t have some of Data’s options including being in a mostly utopian environment where everyone but Data isn’t all that bothered by the fact he is an android. I thought my programming too would be outgrown. It’s embarrassing to say but I carried on thinking that despite a degree in psych from the university rated as Canada’s best and a solid understanding of autism as it didn’t pertain to me. I don’t know why I did. I had enough knowledge to question only the notion that it could be cured. I knew that for anything labelled as pervasive seated in the brain there simply is no such, meaningful thing.

So even at my own most self-loathing I did know that the notion of loving the child but not the autism was pure bull tweet and no good  would come of any approach where people cling to that. I recall so well hearing things said I should never have heard because people dismissed me. Of course that trend persists even now as my stress related loss of speech shows me over and over how much people confuse possessing the ability with intelligence.

Things have been harder than I would like for almost two years straight now. Hard enough to have me in tears of frustration. Hard enough for the issue of whether I should be in a home again to come up but does someone get to pretty well state I am somehow equal to a natural disaster because I cost a lot? No.

For 24 years I was reminded in my work about how often the default narrative seems to be to describe any child in terms of what they cannot do. When the child has a disability there is an alarming tendency for someone, usually a well payed someone, to make what amount to total guesses about what this kid will ever do.

Voldemort Speaks (not going to depart from my long held tradition of not giving them free publicity) has a monetary interest in painting the bleakest possible view. They’ve used every tactic they can think of too exclude actual autistic voices from that the picture they are painting. In recent years they have taken to buying autistics they seem to view as tame enough to say what they want them to say but even that is not working for them.

If there is a need for centralized fundraising then why not do it in a manner that is respectful and doesn’t question any humans right to exist? Why not do it in ways that are actually educational? Right now they are the number one source of bleakness. I have seen my parent friends in tears often enough from sheer exhaustion to know more doom is not needed.

I had a herculean task yesterday. That task was simply tolerating noise and lights long enough to buy four items so I didn’t starve to death before Friday. Sadly that’s not at all hyperbolic. More services are absolutely needed. Treatment is not something I oppose as long as no one is confused about what needs treating. Respite I am 100 percent behind. It would be a sad state of affairs though if we had to subscribe to the Voldemort Speaks vision to get anything. Oh wait since these sort of direct services are still neither a priority nor a huge budget line item even if we totally buy it in every way we don’t have much to gain and our collective humanity to lose.

4 thoughts on “Since Everyone is Posting About Voldemort Speaks

  1. I think comments can often make good blog posts, I do that a lot myself. When you’re in the middle of talking to people and sorting stuff out and you find yourself coming up with some halfway decent bit of writing about something, why not make it a post? The distinction between post and comment is not sacred. That would be silly.

    It helps to do a readover and light edit, but otherwise let your self speak.

    • Well Ariane is always telling me this but until today I never had. I wasn’t sure if editing it since it was technically a comment was okay. I will take your word on that as the ability to do so won’t be around until tomorrow now.

      I do lots of apparently silly things. I guess I always think people shouldn’t have to read my rants two places.

      It’s rare that the energy and motivation to write anything comes and it’s only this one topic that as a principle I don’t give too much energy too where I had ever been tempted to do what I did. They are not the centre of my autistic universe. I would say my dog is but he is a bit small so I must be for gravity to hold true.

  2. Love this and so glad you’re repurposing a comment that only a few might see to a place where more will find!
    And as you know, I love that you’ve single handedly coined the name, “Voldemort Speaks” which is hilarious and so wonderful for so many reasons 🙂

    • I always feel a bit sad for Voldemort but people are generally less confused than if I simply say that group especially where any context to their catastrophic world view will never, ever, happen.

      I am a compassionate person so I do feel badly for even Ms. Wright. It must be horrible on some level to even believe a fraction of her hyperbole. She could like many have done say she used to think these things but she changed her mind. If all that stops her is the notion that the dollars might slow that is an ethical issue. If a fear of being wrong or some notion that any human condition is in any way analogous to non-stop misery she needs a lot of help herself.

      I say that although needing help is sometimes used in a flip way, meaning it. The most severely challenged people I ever looked after still could experience joy if people were willing to seek out how. Joy is something I rarely experience myself but when I do I know it and appreciate the fact.

      My anger is as it usually is a protective one. I sat in a chat room years ago when a teen was there having been threatened by Voldemort speaks. She was totally distraught and no amount of people saying that parody was protected speech was going to change the outcome. On that night in a chat that cannot be bought Voldemort Speaks made 20 enemies. Enemies without any political or financial clout, who could be batted away quite easily it must have seemed, but nevertheless people who would never be confused about their funding priorities.

      I think the term was coined then to be honest and it never caught on but from the first I was unwilling to name them. Now you sometimes see a $ sign which has caught on but money is a neutral thing. It also has value which I don’t think is the case here.

      They could hand out tablets to every autistic person on the planet and the price would still be incredibly not worth it. We all know that will never happen. If their founders had to go personally to each and every person they could afford to fund (which is a lot but hardly everyone on the planet) how many before they questioned their metaphor? Would they ever truly see that person they demand look at them?

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