Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Friday, November 30, 2012

I am

Trigger Warning: Eugenics (mostly veiled-ish)

I am a burden.
I am a "situation."
I am a public health crisis, an epidemic, a tragedy.
I am a tsunami.

I am, I am, I am.
I cost and they pay and we need to know why.
Look at coal! It's vaccines! Pollution! Old fathers!
Cold mothers! Fevers and flu (in mom)!
Genes! Lots of genes!

But why does why help?
What does it do?
Why doesn't say what I need.
Why doesn't say who I am.
Why doesn't say how to help.
Why doesn't say good or bad or neutral.
Why, why, why doesn't do much.

Unless the aim is for me not to exist?
Am I just too broken to understand?
Too broken to realize that the best thing for me is nonexistence?
Too unaware to realize I should never have been?
Too selfish to accept that my kind's nonexistence is the goal?

No.
I am none of those things.
I am no burden.
I am no "situation."
I am no public health crisis, no epidemic, no tragedy.
I am no tsunami.

I am a person.
My brain is different.
My nervous system is different.
The way I see the world is different.
Different, even disabled, but not broken.
Never broken.

I am no mistake.
I am no new difference.
I do not come from coal.
I do not come from vaccines.
No conspiracy made me- I was always here.
It's just that you can see me now.
I'll not retreat to the shadows again.
This time, this time you will listen.
This time I will be heard.
I am here.

Thursday, November 29, 2012

Organ Transplant Discrimination

Trigger Warning: I'm talking about discrimination based in ableism.

It's a thing. I know it's a thing. Amanda and her family know it's a thing. Lief of Life for Lief knows it's a thing. The 23 year old who was denied a heart transplant knows. Robert of Save Our Precious Son's Life knows it's a thing.
There's a petition aiming to stop it. This shouldn't even be needed, considering that the ADA and Rehabilitation Act both say that healthcare providers aren't allowed to discriminate based on disability, but it is. We are legitimately petitioning the government to make people follow anti-discrimination laws. Really. We actually have to make and sign and share petitions to make people follow anti-discrimination laws on a regular basis. Remember the whole I Stand WITH Henry business? That was a case of telling people to follow the ADA too. Or Neurodivergent K filing an ADA lawsuit in order to take a gym class at her community college? It's a pretty common issue, and it shouldn't be. The whole attitude of society seeing Autistic people as somehow incapable not-quite-people needs to change, and it needs to change now.
If it were already changed, we wouldn't need this petition. Doctors often think that the quality of life that an Autistic person has means that their life is not worth saving, and that's not OK. They are not mind-readers. In other cases, they let the patient decide if the quality of life they would have with a transplant is such that they want to try, barring issues that would mean the transplant is likely to fail/be rejected by the body. In the case of Autistic people, they make this decision for us. People hear autism and think tragic burden. That needs to change.
But change in the eyes of the world is slow. It is too slow to save the people who are looking to be on transplant lists now, and it is too slow to save the people who will need transplants before these attitudes change. These lives are worth saving. These are the lives of people. Autistic people are people, with lives and with families and with goals and aspirations and everything else neurotypical people have.
That's where the petition comes in. That's where making doctors obey the law comes in, really, and that's what the petition is asking for. Sign it. Share it. Blog about it. Like the Facebook page. Share it on Facebook. Tweet it. Retweet it. Write on walls about it. Tumblr it. Reblog it. Email it to your friends. Email it to your family. Bug the psychology department or the special education department or any department of any school or hospital or anything that could possibly be relevant. Just make sure it gets the 25,000 signatures by December 14 that it needs in order to get a presidential response. Yeah, I know, it's a long shot that he'll do anything besides repeat that it's illegal, but maybe, just maybe, they'll do something about the fact that doctors do it anyways. That's what needs fixing. It's not the law, in this case. It's the people ignoring it.
So go SIGN. And here's the short link if you want it: http://wh.gov/X4yM

Wednesday, November 28, 2012

The River is White

Rivers aren't supposed to be opaque and white, right? The local river in Aodi, Zhejiang seems to have missed the memo, and it's not alone. In fact, it is the third river in China to have turned white in a month. In addition, the river in Chongqing turned red and Jiaxing has found an orange river from excess iron. Resident reactions range from anger at the business that caused the color change in the cases where the cause is known to confusion to bottling of the water to show off the colors to one fisherman going about his business as if the river turning read made no difference to him. Assuming that fish were still to be found in the river (unlikely, though possible if this were the first morning of the river being red,) it probably didn't make much difference-yet. From "normal" pollutants to corpses, all sorts of things have been reported in China's rivers, and the rather varied pollution doesn't seem to be slowing.
Why should it? The companies which are dumping white rock-dust or dyes or latex waste or iron ions have no economic incentive strong enough to make them clean their waste well enough to prevent this sort of event. The total costs of pollution are not paid completely by the companies doing the polluting, or even mostly by them in many cases. With much of the cost being paid by local residents who can not use the water to wash their clothes, water their fields, water their livestock, or drink themselves (even after the boiling that is needed to drink even unpolluted water in most of China,) there is little balance in who gains and who loses. The corporations which are dumping pollutants into the rivers are not paying much to do so (certainly less than it would cost to treat the water first, or else they would,) and the locals gain far less benefit from the corporate profits than the harm caused by inability to clean themselves or have water to drink.
This sort of externality is a large problem in pollution and climate change. If a corporation can make a cost external, they have no reason not to do so, and then the people paying the cost are not the corporation, profits are increased by the decreased costs, and people suffer. Rich countries send factories to poorer and developing countries, externalizing many of the pollution-based costs for themselves but causing the poorer countries to foot these costs, further increasing inequality.
No one wants to pay the price of slowing economic growth to help the environment, and no one wants to pay the price of pollution in their back yards to keep the economy running in the way it has been, and so we find that the richest keep the growth moving and externalize as many costs as possible to the poorest, often ignoring the cyclic effect of the economy leading to climate changes that affect poorer parts of the world more that then increase economic inequality, increasing environmental damage to the world that is still concentrated in the poorer areas. This matches quite well with the idea that environmental regulations and the costs of pollution abatement have more effect on industries that create more pollution and which are easier to move to new locations- the industries causing this sort of extreme pollution are concentrated in developing nations and are of types that are largely leaving developed nations. Inequality, local pollution issues, climate change, and the differences between environmental protection regulations in different locations seem to be highly interrelated, and when industry, developing nations, and villages where the locals have fewer personal resources combine, we get rivers turning white and demands from the local residents that the industry in question be shut down. Most likely, these demands will go unheeded, as corporations typically hold more sway than individuals.

FOOTLOOSE AND POLLUTION-FREE Josh Ederington, Arik Levinson, and Jenny Minier*

Tuesday, November 27, 2012

Misrepresentation

Lydia of Autistic Hoya has written about misrepresentation before, and she got cited. Getting cited is great, but here is the irony: she got misrepresented in an article about misrepresentation. Here is the offending post: (Clicking the picture will bring you to the post, which will allow the use of screen-readers.)

And here is the problem- well, at least some of the problems. That screenshot is from 11:39pm, EST, 11/26/2012. At 11:42pm, this comment was still awaiting moderation on the site, which is odd considering that most people who moderate comments... actually moderate comments? There are still no published comments several days later, and I know I'm not the only one who attempted to correct this misinformation. My comment:

It reads:
Alyssa says:
Your comment is awaiting moderation.
NOVEMBER 24, 2012 AT 8:06 PM

Uh... you kind of misrepresented one in your article about misrepresentation (accidentally, I'm sure.)
Her name is Lydia, not Linda, the blog is Autistic Hoya, not Autism Hoya, and she specifically states that she wishes to be called an Autistic person, not a person with autism on her blog, which she is the sole writer of, not a co-founder. It shouldn't be too hard to fix, what with the information right here for you.

Two days later, and there is no fix and no response. I know all the information I provided is accurate for a few reasons:
  1. I know Lydia, including the knowledge that her name is, in fact, Lydia. It also says this at the bottom of the page in the copyright notice.
  2. Her blogs sidebar says that she wants to be called an Autistic person, not a person with autism. It even links three posts she wrote talking about why.
  3. Looking at the blog, it's called Autistic Hoya.
Basically, an autistic person is being misrepresented while her work is used in an article about misrepresentation. Sound ironic? It should. Sound familiar? It reminds me of the Kassiane having her work on self-determination used by Autism Speaks without them asking her first, ignoring her self-determination. Autistic people do seem to get this sort of irony in our lives, don't we? (That doesn't make it OK.)

EDIT: The post about misrepresentation has been deleted, so Lydia isn't getting misrepresented there anymore, at the least.