I am in a more somber mood these days. I had to go on hiatus because my family has just put my Great Aunt Roxie Jackson to rest. She was a wonderful lady. We did not spend as much time with her as other people in my family did, my mother and me, but she always made us feel welcome, like members of the family. I remember going to her house the last time, after the funeral. The spirit of welcoming, friendliness and family was gone from the house. Strange, after a person goes away from us, how the spirit in their objects changes. I took one last look at everything, because I felt this was the last time I would ever see them, or memories of her. It just saddens me to the point of zapping my energy how much I miss her already. We always had fun whenever we would get together, my mother, Aunt Roxie and me. We would giggle about how we would have “lunch on the lanai” – or just bologna sandwiches on the back porch at her place. Then we would talk about family, love, life, and whatever came up. (However, everyone else was tight-lipped in the family, treating us as outsiders. Yes, I have complained about it before-but unfortunately, in the case of my mother and I, it is true. That is all I can say about that.) She would often get gifts to us that would, by mere coincidence, be just what we would be wanting most of the time. I have the last two Christmas presents she gave me-fashionable scarves that she says belonged to my great-grandmother-and they’re gorgeous. I miss her already, so much. She made things much more bearable as we live here in Kentucky. We liked having family around, a lot. We would like it more if the family welcomed us like Aunt Roxie did.
Here we go again: the issue of weight and beauty coming into our midst, with the tag #ImNoAngel, dubbed by Victoria’s Secret. Don’t get me wrong, I absolutely LOVE the idea. What troubles me is that it still has to be done in 2015. Come on, guys, it’s the 21st Century. The idea that you have to campaign for beauty to include you is so 1899. It is not what a 21st-Century woman needs to hear or be to find acceptance.
What I hate most about the weight and beauty issue is the idea that beauty is a dictatorship, yet another way to measure women, to see if they are “acceptable” or “passing.” It reminds me of the times that murderers are accused of having autism. It reminds me of the times that my hair is too flat, or my skin is too pale, or too dark…or of the time of segregation. Yeah, that’s what troubles me about beauty. It’s a sort of segregation against all the women that are not the beauty ideal. Now, I understand that segregation and discrimination has dogged members of nonwhite races for generations…but in this whole “you can never be too thin” mentality, I feel left out. I know I will never be the rail-thin body the Beauty Dictatorship wants. And in this, I am segregated out of the better parties, the good man’s dating circles, and life of the
And this idea that the women who are the rail-thin ideal are “angels,” like they are pure and innocent and unthinking of any wrong drives me up the wall. It does so in the fact that women are still only accepted if they follow the rules. And the rules are…
1) Men control the world.
2) Women must be the ideals that men want, as objects.
3) Women cannot come into the men’s club unless they are what the men want, as objects.
4) All other women sit at the back of the bus.
As a woman sitting at the back of the bus, I’m going to play the part of the woman rushing the front. #ImNoAngel is a campaign to get all women to sit at the front of the bus, like the thin and dictatorship beautiful types get to, unless they break the rules. (Like being their own person, for instance.) Some people think I might not be giving men the credit they’re due, but it is society’s rulers, who are mostly men, that are pushing me to the back of the bus. I am beautiful. I may not pass the dictatorship, but I am beautiful. You can see it in my eyes. Remember #EffYourBeautyStandards? This is the same thing. I am giving the finger to the Beauty Dictatorship. Beauty needs to be a democracy.
I keep wondering what it would be like if all the resources going toward cure research, such as Autism Speaks, and fighting Autism Speaks and pro-cure organizations, were actually diverted toward something that could be accomplished: actually helping the actually autistic. There is so much division and fighting among the autism organizations that we are not getting anything done.
This World Autism Day, we need to come together. We need to come together and decide what is actually best for autistic people, while including autistic people in the decisions. One of the parallel organizations for those with mental illness is the National Alliance on Mental Illness, or NAMI. One of NAMI’s best parts is that it includes, and receives help and decision making from those with mental illness. What I am saying is that the autistic need to be part of the autism debate. Just because the autistic may have speech and language delays does not mean they have no speech at all. As a matter of fact, many of us have full speech capabilities, and eventually grow into socialization. Who better to learn about autism than from the autistic? I will not stand by and watch as the autistic are marginalized, institutionalized and ostracized from the debate about what to do with them.
In case you are wondering, I come down on this side of the “cure” debate: I do not believe a cure is possible, especially for what is increasingly seen as a series of genetic traits. Recent studies show that autism is over 90% inherited. If that is the case, then why worry about a cure when you can help the autistic individual adapt to a society not made for them, which can actually happen? Since a cure has not been reached, we need to divert resources toward accepting the autistic into society as regular members, just like any other person with a perceived disability or trait dissimilar to most people.
I wish Autism Speaks could get the message that cure is not possible, and that helping the autistic and society adapt is the solution. All autism organizations need to come together to advocate, not cure. In a genetic sense, a cure requires eugenics, which is something I will not tolerate. I hope this message gets through to the masses, and we come together to help make a society better than we experienced in a bully-laden high school, a better society which helps and adapts to us all.
I’m going to #WalkInRed and #LightItUpGold on Thursday.
Mom prepares me,
but nothing can inoculate fear colored blue
masked in lights, shining brightly.
The terror seeps through.
Awareness disguised as tolerance is not the same as love.
An uneasy embrace may appear affectionate,
but can feel worse than a slap.
Words said with anger are not kind,
no matter what each word means by itself.
choose many feelings,
but please do not choose blue.
As I have said in response to a previous post, my viewpoint was dismissed at the Autism Society of the Bluegrass meeting I went to when I revealed I was autistic. This greatly dismayed me, even though I had a viewpoint that might have been useful to the people there. They were only interested in pushing their own agenda past what someone their agenda might actually affect. My dismay is this: Would they dismiss the viewpoints of their own children, had they the words and understanding I did, the very people who their actions would affect? Why do they not listen to us?
There are reasons you need to listen to adults on the spectrum, if you want to truly understand living with autism. For one, we actually have life experience dealing with autism. We can tell you about sensory issues, echolalia, the words not forming when you need them to, etc. We can tell you that. Or do you not want to hear what might actually be going on with your children? Autism is more than a concept or plague when you talk to us. It is that thing which gives us a little curve in dealing with people and our surroundings. Autism is a way of life for us. Even if you just want to cure and stop autism, you cannot cure it right now. You have to deal with it. Why not give those of us who are actually dealing with autism a chance to tell you what it is actually like?
It reminds me of a scene in “The Sword in the Stone,” an innocent Disney movie which gives us a scene about flying:
It’s just like that. Would you rather learn about autism from people who may know an inkling about what is going on, or somebody who actually knows what is going on? It’s also like getting a tour or a city you’ve never been before. Would you rather get a tour from a book, or from a local? A local makes more sense to me.
Besides, there is a big reason you need to listen and acknowledge what adults on the autism spectrum say. You are setting your own children up for discrimination and failure. Not acknowledging what autistic adults have to say now will set a precedent for not acknowledging what your own children, as autistic adults themselves, have to say in the future. They will be discriminated against, and as you know, when people are dismissed when it’s important, they get desperate. Their communication gets more obvious, and then it gets violent. Who knows what autistic adults will do in the future if their viewpoints are dismissed and minimized in the present? We can prevent future violence by present acknowledgment. Can you not see the consequences in the future? I can see them now. We can stop them. Listen to us autistic adults. We are trying to communicate.
Okay, let’s veer off course for a bit and have some fun. We’re going to talk about two causes for autism awareness and acceptance. Just so you know, acceptance trumps awareness for me, because the awareness speaks of gives an air of fear and shame around the condition of autism, which is NOTHING TO BE ASHAMED OF. Got it? Since that is out of the way, I’m going to talk about Walking In Red, AND….the Twizzler Challenge.
First, let’s do Walking In Red. Walking In Red symbolizes that you stand with the Actually Autistic, like me, in solidarity of Acceptance. Now, I know Autism Speaks is all about CURE, but I don’t think CURE is possible, so I’m going towards Acceptance. This is simple: you put on a pair of red shoes, or red socks, like these, or something else red, and take a selfie to spread around the Net. It’s so simple, and yet so bold. Of course, you can do something else for Autism…that is, the Twizzler Challenge.
The Twizzler Challenge is more complicated. Complicated, because…you need someone else to do it with. The point is, you and this other person start at the ends of a Twizzler, and eat it to the middle, like Lady and the Tramp. Of course, I don’t have anyone to do the Twizzler Challenge with, but there are some guys I would do the Twizzler Challenge with. Google these guys, if you don’t know who they are.
Harry Connick, Jr.
Lou Diamond Phillips
Any member of New Kids on the Block
Adam Copeland…he used to be Edge..
Benedict Cumberbatch…yes, even though I got mad at him, I would DEFINITELY do the Twizzler Challenge with him. He’s my current favorite. That’s why I got so mad.
And, of course, there are more people I would do the Twizzler Challenge with. So, whoever you are, the Twizzler is waiting, and so am I.
I disliked the ladies of the Autism Society of the Bluegrass because they dismissed my viewpoint when I revealed I was autistic, too.
Remember a few years back when the Temple Grandin movie came out? The part that really sticks out for me was at the end of the film. When Temple stood up at the conference and told the room that she was Autistic. All of the parents and professionals were so excited and practically begging to hear her voice. Maybe it was different for Temple Grandin. Maybe they added that part for dramatic effect. Maybe that particular autism conference took place in an alternate reality….like Bizzarro World. Because in the real world, nobody cares about what we have to say.
As a parent of an Autistic child, I am usually seen as an “authority” on autism. That is, until I also disclose my own diagnosis. I am Autistic too, and the things I have to say often conflict with what people think they know about autism. I know that I am…
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