"A Voice for Autism?" Not with Autism Speaks.

Those of you who have Facebook friends in common with me will be familiar with the news going around:  Cafe Press is donating 10% of all autism-related sales to Autism Speaks.  You can read about it here.  I heard it from Paula C. Durbin-Westby and several other friends have posted about it.  The reaction I've seen has been purely negative. 

I commented on Cafe Press's blog.  So did some other people.  Our comments seem to be awaiting moderation still.  I identified myself as an autistic woman and explained, briefly, why donating to Autism Speaks was a bad idea.  They call their campaign "A Voice for Autism" and the voices of autistic people are being ignored.  Autism Speaks fills the function of making non-autistic people feel good about themselves for donating a quarter to those poor disabled kids, and if we disagree we are ignored or chastized. 

You might wonder, what's the big deal about Autism Speaks?  I've been wanting to write this piece for a while and now I don't even know where to start.  I'll have to write my giant Autism Speaks post later since I don't have the time right now.

For now, I'm asking those of you reading this to write to Cafe Press and tell them how you feel about this.  If you have a Cafe Press store, especially one that has "autism" in any of the product titles, let them know you don't appreciate that you can't opt out of the money being donated to causes you don't support.  I will be boycotting Cafe Press until they issue an apology.  Autism Speaks isn't getting a dime from me until they stop treating all autistic people like tragedies that need to be fixed by brave, loving, non-autistic people, and they stop using fear tactics, stop spreading false information, stop threatening and harassing autistic bloggers, and start managing their money correctly.  Any organization that donates to Autism Speaks does not care about my patronage and is in fact supporting an organization that is openly hostile to my neurology.  I boycott them.  I advise you to do so as well.

Another Murder

Trigger Warning:  Describes the abuse and murder of an autistic child.

I have no idea how to explain how angry and sad stories like this one make me feel.  Another mother has murdered her autistic child--this time by forcing him to swallow bleach.  As if it's not bad enough that she force-fed her kid poison that caused him to die of internal chemical burns, other autism mommies are on her side.  Didn't you know that it's just so hard raising an autistic kid?  It's so hard, in fact, that apparently we're to believe that it's understandable and even honorable to kill your own kid for no other reason than that the kid is autistic.

This phenomena isn't limited to autism.  Disabled children are murdered every day for similar reasons.  No one wants to blame the parents because they think they have it so hard.  So they vilify the condition, unable to comprehend that to vilify the condition in this way is to vilify the people who have the condition.  Since disabled people's lives are not considered valuable like "real" people's lives are, their pain and experiences are not considered when they are murdered by the people who claim to care for them (although mysteriously enough, abusing a disabled child, which is a far less serious crime than murder, is considered to be evil).  The parents and family of a disabled child are practically seen as saints by our society, and that often continues after the so-called saints have abused or murdered their child.  We see this happen over and over again, and no matter how many times we challenge this, the general public seems just as ignorant of the fact that murdering a disabled person is still murder, even if you're their parent, even if it's hard, even if you "don't get enough support."

I don't understand why killing someone for being disabled isn't a hate crime.  If you killed your son because he was gay and you didn't want him to be gay, it would be a hate crime.  If you killed your son because he was black and you didn't want him to be black, it would be a hate crime.  Punishment for killing disabled children often amounts to no more than a slap on the wrist--I remember a recent case that infuriated me where a woman killed her autistic daughter and was simply released after her trial.  She went on to tell reporters that she loved her daughter and hated autism, and that was why she'd killed her.  And groups like Autism Speaks aren't helping; they have used this kind of sentiment to attract money to themselves and their executives have even openly fantasized about killing their autistic children on tape.  In front of the children.

If you could accept that autism was so terrible that murdering an autistic child was a legitimate option, you would have to accept that the autistic children are to blame for their own condition and the apparent misery of their parents.  It pins the responsibility on the victim of the crime instead of the perpetrator, in this case an adult and a mother who should have been in control of her own actions.  She had been plotting to kill her son for years and she did it deliberately.  I'm assuming that the kid wasn't going to just happily swallow the bleach either.  Somewhere in the middle of fighting with him to drink it, watching his face get burned from where the bleach had spilled, she had to stop and think, "Maybe I should call an ambulance.  Maybe I should stop."  She called 999 for herself.  And I already know she probably had some mental health issues going on.  But her actions suggest that she would not meet the legal requirements for insanity (because she was aware that what she was doing was wrong), and her actions should not be excused.

I don't know why this is still okay, 20 years after the ADA was signed.  It's not okay to me, and it's not okay to a whole lot of other autistic people.  If you're a non-autistic person reading this, and you're not familiar with these concepts, please understand that autistic people do have feelings.  We can be hurt by comments like this, and more importantly, these comments shouldn't be made in the first place.  Any attempts to make the murderers of autistic children sympathetic is nothing more than apologism.  I want to see a future where language like this isn't used and ideas like that aren't spread, and then maybe autistic children will stop getting hurt.

On getting my ass moving...

I keep not posting and I really don't know why, although now that I think about it I guess I'm afraid no one's listening.  I have a lot of connections with other autistic bloggers and so on but I haven't exactly gone out and invited everyone to start reading the blog.  I'm kind of terrified of the idea that I could post something about people from my personal life and forget that it may offend them.  Because this is the first time I've had an idea of myself putting things out in public instead of keeping them in private conversations.  Oh, well, I'll cross that bridge when I come to it.

So a sorority at my school was raising money for Autism Speaks.  I was going to lunch with a friend from class and I turned and saw one of the girls waving a sign with the little puzzle pieces on them.  I was so angry.  I was just shaking with anger and I could barely think straight.  I went up to the table and asked them if they supported eugenics and told them they might consider finding a new organization.  Actually that makes me sound too well-organized.  I was kind of in mid-meltdown (and meltdowns don't leave me with much room for effective communication), so I wound up stuttering out something that made me sound a little insane and then running up the escalator.  I couldn't concentrate in class; I was shaking still an hour later.  So I stopped trying to take notes on my computer (which I sometimes use instead of notebooks for the sake of organizatino) and instead typed an e-mail to someone in my school about it, hoping it would get someone responding to me. 

I was very surprised when I got a meeting out of it with the advisor for Greek Life and someone at the Student Life center.  I organized a bunch of  data on why Autism Speaks is bad (if you don't know about this I think www.notautismspeaks.tk sums it up pretty well and a Google search can get you the info as well.)  So I managed to convince the boyfriend to take off work to come with me because I was terrified and I am not good at that sort of thing, and he works for the government so he is used to the kind of bullshit I expected to encounter.

They were surprisingly polite and seemed pretty sympathetic to me.  I was surprisingly conversational, although I'm sure they weren't used to someone being that eloquent while staring firmly at the table for an hour.  I tried very hard to fake eye contact and I just couldn't.  It always sounds like it will be easier when I'm thinking about it than it is when I try to do it.  They told me they would talk to the sorority but they couldn't really do anything about what student organizations raised money for.  Basically, they could raise money for the KKK and the school can't do anything about it.  The important thing is that they actually listened to me for an hour and took the information I gave them, along with a list of other organizations that would be more suitable to raise money for if the sorority is really interested in promoting supportive services for autistic people.

I also got information on how to form a student group for disability rights.  It's entirely probable that next time the sorority or anyone else tries to raise money for Autism Speaks, I may have a few people willing to picket them with me. 

I recently got an e-mail from Disability Access Services from my school.  For a little background, I went to DAS as a freshman asking for them to help with things related to my hearing loss and my autism.  They were kind of the opposite of help and we couldn't figure out a way to make them do what they were supposed to.  Although they did tell me I was to meet with one of them once a month for reasons I can't exactly figure out.  Went to two meetings, but the second one (with the coordinator of that office) happened while I was sick with a mild flu.  I asked her awkwardly at the end of the meeting if she knew how I could see the campus clinic next door.  She seemed alarmed and took me there herself, and told the girl at the front desk I needed a psychiatrist and it was an emergency.  I had to explain in front of everyone that I was not in fact suicidal and just needed someone to check up on my respiratory illness.  I left without seeing a doctor, feeling both embarrassed and weirded out.

Then I broke my foot badly.  I had an avulsion fracture of the 5th metatarsal that required two surgeries to fix.  I am too uncoordinated to use crutches so I was in a wheelchair for two months.  I wasn't too upset because my brother had brittle bones when we were growing up and I'd used his wheelchair before; they don't actually suck as much as my friends seem to think they do.  But my school has a lot of hills so my father had to take me to school every day.  One building I had three classes in was an older building that only had one door that was accessible for a wheelchair user.  When I tried to get into it for the first time, I found that it was locked.  There was a card slot next to it, so I tried using my student ID but it wouldn't work.  My father had to go around into the building and open the door for me from the other side.  I contacted DAS to figure out how I would get in the building.  They said they had to put something on my student ID card to make it work in the door.  I asked if they would do that for me, and they said no.

DAS has never done anything to help me, even though I have only asked them for the simplest, least time-consuming things possible.  So I'm not a big fan of them.  And today they sent me an e-mail letting me know about their exciting news.  Seems they have a new office space (yay for them) and the old coordinator who gave me so much trouble has retired and a new coordinator started in her place.  I wrote him an e-mail detailing my experience with DAS.  I then asked him if I could continue to expect the same level of services s before or if they would actually start helping the university's disabled students, which is what they are paid to do.  Haven't gotten a response yet, but I felt awesome after sending  the e-mail.  I just sent it today, so I figure I'll wait a week for a response and then decide what to do.

In other news, October 1st was my one-year anniversary with Sean, and he proposed to me.  He took me out to eat and when we were standing outside the restaurant looking at the sunset, he pointed to a nearly jewelry store and told me I had to go with him there because he didn't know my ring size.  I couldn't talk for a minute and just made excited squeaking sounds while I hugged him, and then I said yes, even though he hadn't asked the specific question. 

So we went inside and explained to the people we were looking for an engagement ring but I don't like diamonds (not just personal preference; the idea of blood diamonds makes me queasy).  So we wound up doing a custom sapphire ring with a light blue stone.  It was awesome.  Now I'm doing wedding planning.  So between this, school, and everything else, I have suddenly become a very busy person.  But I like constantly having projects so I suppose that's all good.