Friday, March 13, 2015

Out Love Hate

Image of a fence with horizontal planks and green foliage peeking over the top. Painted on the fence are the words:
"Out love hate" Stamped with raisingrebelsouls.blogspot.com

Thursday, March 12, 2015

On Autism, Vaccines, and Love in my Activism

A while back, I made a bold declaration of my thoughts about Autism and vaccines on my Facebook page. I asked all those opposed to vaccinating their children because they believed it would cause them to be Autistic, to unfriend and block me. I did not expect to lose anyone of significance in my life, but I did. This was more than losing a casual Facebook friend. A friend that I have held close for twenty years, disappeared. It was crushing to find him gone.

I would like to begin with giving my friend every benefit of the doubt. His journey as a parent has taken him to lows I hope to never know. Giving the littlest information I can, his first child had a terminal condition and lived a very short, painful, life. There is no one I can imagine that could have handled these circumstances with more strength and grace. He is a beautiful father. He is love.

In contrast, my journey started with two healthy babies. I had quite a while of parenting without major concern. It was hard with two infants, it was different than the experiences of other parents because they were twins, but it was relatively "normal". Then of course that time comes where the Autistic child begins to stand out. Ty was a step behind. It became obvious that he was Autistic.

Here's the part that I am ashamed to tell. I grieved. What I mean is, I related to my friend in a way I shouldn't have. I compared myself to him. I believed the fear and tragedy story of Autism. I believed my child was sick and destined to suffer. I felt like I had lost my child. I fucking felt like I did when someone I loved died. My face gets red hot knowing I am going to have to settle up with my children about that someday. I am ashamed to tell but I did that.

While I was privileged to be pulled out of that place of despair, my loss was only a figment. My friend's was not. While my ableism allowed me to grieve, I walked out of that grief with my children. My friend did not. While I am here fighting for my Autistic children's acceptance, my friend's child is no longer here, and never will be here, and no matter if he takes on the world too, he has to accept that.

A year or more ago I learned that my friend was suspicious of vaccines and believed that they were possibly related to the medical condition his child had. I made it clear that despite ideas about vaccines being dangerous, my Autistic children needed to be kept out of the matter. I tried to explain that my children should not be held up as a tool of fear, that there was no scientific evidence to support a link between Autism and vaccines, that this was a matter of civil injustice.

Yes, I mistakenly related to my friend in my grief, and I think that maybe my friend has mistakenly related to me too. My children are not sick. They aren't suffering. They aren't lost. We have both had our ups and downs, but never should my friend nor I, relate his experience as a father losing his child, to my experience raising Autistic children. Never. We are not the same. Not that way.

Part of me was crushed because I know this is all a big mistake. Vaccines do not cause Autism. Autism is genetic, just as I so boldly declared. But, the medicalization of Autism contradicts these truths. If a person believes my children are sick, something made them sick. That person can then find plenty of anecdotal accounts from misguided parents and "professionals" to back up that belief. The myth that vaccines cause Autism, and the lie that Autism is medical disorder go hand in hand. They give credence to one another.

Part of me was crushed to find him gone because I made mistakes. I could have had more compassion for his journey. I could have chosen different words. I could have left out the ultimatum and asked for conversation. I could have gone to him and tried to listen as hard as I tried to explain. Maybe my friend, with all the hype and his deserved fears, could not risk having another sick child. For sure, I cannot risk letting people believe that my children are sick. But, I could have been love.

My friend, I am sorry I was not.

Monday, March 9, 2015

Autism Science Project

Let's just say someone was doing a science project, all in honor of you! Let's pretend it was a really big science project using tons-o-money, but the intentions of the project were to make your life better so money is irrelevant. The scientists begin their work and they are getting somewhere. Where?

They've forgotten something haven't they? They were supposed to be working to make your life better, but they decided what makes your life better without consulting you. They figured you were miserable. I mean look at you, you're disabled. Your life is worth less. It's worthless.

They figured you were too insignificant to have an opinion anyway. You don't know what's good for you. Plus, with all the money these scientists have, they must be legit. Money is power. They do their science project at a fancy University too. These are important people. More important than you.

Anyway, the scientists come up with a really cool thing. It's called eugenics. Basically, it's a prenatal test so that mothers don't have to have worthless babies anymore. It makes the rest of our lives so much better when little Autistic kids like you aren't running around. You are too sensitive. You are even complaining about this. It's not about you.

Who cares if we said it was? Anyone?

Sunday, March 8, 2015

Humiliation is Abuse

Yesterday evening, the article Peterborough Couple Live Tweet A Severe Meltdown From Their Autistic Child came across my newsfeed. Apparently, two "Autism parents", Kate and Jason Wells, broadcast their Autistic son's meltdown on Twitter. The article explains:

 "Their raw, emotional tweets give us a first-hand look at what it's like to live through a meltdown, magnified as Aidan gets older and stronger—and harder to restrain."

What the article doesn't say, is that it is also a demonstration of emotional abuse. Yes. Kate and Jason abused their son by exposing his most vulnerable moments on Twitter.

Humiliation is Abuse.

In fact, the Center for Disease Control and Prevention uses humiliation as it's first descriptor when defining emotional abuse. It is one of the distinguishing factors between the legal definitions of discipline and abuse. Kate and Jason are absolutely humiliating their son. The fear rhetoric is thick in their descriptions. Words like "scariest" "afraid" "heartbreaking" "unnatural" "horror" "darker side" "nightmare" serve to shame a child for the most challenging part of their disability. Shaming him, using him, abusing him, all to comfort their self inflicted wounds.

Exposing your child's darkest moments is a cruel.

The irony is rich here. Aren't Kate and Jason the ones throwing tantrums on Twitter? While Jason talks of taking his son down in "safe MMA style" Kate is crying about her own mental health issues. She bemoans "Tweeting helps me during meltdowns for my sanity,strength,support&feeling like there's a chance I'm helping someone else feel not so alone". Not their child, they want to help someone else. According to Jason, it was the worst 24 hours of their lives. Poor Kate and Jason. Autism is all about them. Or at least, it's only them and their feelings that matter.

They are the ones making a scene.

If I was Jason and Kate's son, I too would be having a meltdowns. Though some Autistic children struggle to communicate with words, they are very good at communicating their feelings. What caused the meltdown? Why should this child be at ease when his parents don't respect his basic human rights? Why should he not rage, when the people who are supposed to love and support him most, are busy humiliating him instead? If an Autistic person is having a meltdown something is wrong. Jason and Kate never even consider why.

Sometimes having a meltdown is a good way to defend yourself.


It's quite sad to realize that not only are parents like these abusing their children publicly, but that the media, general public, and all those other "Autism parents" out there, don't even bat an eye at such horrid behavior. The behavior of this child will likely be modified with hours and years of therapy, and look at his parents. The lie that Autistics lack empathy is rampant, and yet his parents are among the most egotistical ones I've encountered. Once again, the media, the general public, and "Autism parents" blame the victim.

His parents abused him and then pretended it was the other way.

Of course, abusive parents do not usually limit themselves to one incident. It takes a lousy mindset to even consider exploiting your disabled child. That lousy mindset bleeds into everything. Jason and Kate have refused to acknowledge their child as a human being with basic rights to privacy and dignity. Why should we believe that their day to day parenting is any different? This is common in the Autism community. Parents like Kelli Stapleton, who also humiliated her child on Twitter, give a good illustration of how far it can go.

It's a slippery slope.

Yes, caregiving is difficult, but no, you do not get to humiliate a person and call it "care". I get it. I have two Autistic children. I know the bad days. The hard days. I have days when I feel defeated too. Never would I take advantage of my children for sympathy. Never would I expose or blame them. That doesn't help their disabled child. It only makes it harder for that child and all Autistic people to live in this world that dreads their existence. It isn't helping parents either. It's toxicity posed as support. Sympathy is shallow and it needs replenished often.

Exploiting their child this once will never be enough.

The only thing this article and Kate and Jason's actions give, is a first hand look at is emotional abuse, parental martyrdom, and the exploitation of a child. Neither parent exhibits consideration for their son's experience, and only mention concern for themselves and their  non-Autistic daughter in their created public spectacle. It is not acceptable to treat Autistic people this way. It's not acceptable that the overwhelming majority of reporting on Autism condones and then promotes this abusive treatment. It's not acceptable to do what Kate and Jason did.

Humiliation is abuse. Times that by the internet.

I know who should be ashamed. You guys screwed up big. Fix it. Take down the tweets and apologize to your kid.

Friday, March 6, 2015

Drives Me Crazy

Image of Langston Hughes looking down. Text reads: "Looks like what drives me crazy don't have no effect on you- But I'm gonna keep on at it, Till it drives you crazy too. Langston Hughes.



In my last post, I asked a question of myself for the readers' benefit. I would like to explore this question further. Why am I so critical of organizations like Autism Speaks and Autism Daily Newscast? Why am I tough on so many parents of Autistic children and even "Autism experts"? Why can't I just do my thing and let everyone else do what they want to do? See the photo above.

On a very personal level, that stuff that drives the activist has always been in me. I can't stand injustice, never have. Never put up with liars. Never content to sit in apathy. Never settled. Always a rebel. I've been demanding more respect for children since I was a child myself. I would push against those mistreating my children no matter what direction it came, and I will. If I wasn't here I would be somewhere else, no matter, actively working to make the world a better place.

It's far more than just who I am though. It's the injury I experienced. My fear at having Autistic children broke me. MY fear. MY ableism. MY bigotry. It broke me. I grieved when I should have been celebrating. And it broke me again to see the error of my ways. To know I betrayed my children. To know I caused harm. To know that it never had to be. I never had to go through that. If I can keep one parent from that pain, I will. I speak up because it was others speaking up that mended my mind and heart.

But I am not really that important. It's my kids. These organizations, these parents and professionals are talking about my children when they say, burden, cure, tragedy, broken. Though it is difficult to hear as a mother, it's not about me. Imagine your existence was being tainted. Imagine every person that greets you has pity in their eyes. Imagine trying to grow up honorable, while being given no honor in return. The world has picked a fight with mine, and I am their strongest ally until they can pick up the fight themselves. Just you wait.

And it's bigger than them. It's their whole people. Autistic adults have endured growing up in this world offering no honor. As a group, they have never had the kind of acceptance it takes to fulfill potential. That's only what they have not been given. They have also been robbed of knowing who they are. Knowing what little I do, the Autistic people we have been holding down, will knock this world back right every chance they get. They are a beautiful and strong, very very strong, people. Acceptance will turn into appreciation. It has for me.

If I believe that humanity is ultimately good, that there are more rights than wrongs, more love than hate, then given time the world will come to appreciate my children and their people. Time alone doesn't settle me. My kids are growing up too quick. Too many lives have already been stifled. Too much has already been taken. I recognize that the good I have been given, my privilege combined with what's intrinsic, must be used to push time along. To push humanity. Push for rights. Push for love. The good in me comes with responsibility. Yours does too.

The biggest part of that responsibility is offered up to my children. I have changed my whole life to meet their needs. My service manifests here in writing. This is my heart and soul on your computer screen. I work diligently to support parents and Autistic people through the PACLA community. I participate in wonderful and positive group efforts. I signal boost Autistic voices. These things are my pleasure.

There is dirty work not to be ignored. The boycott. The critiques. The jolting. That's the hard stuff like pointing out the things people don't want to know about themselves. Calling their ideas and actions what they are, bigoted, prejudiced, narrow minded, is ugly. It's stressful. It's not something I want to do, but isn't that work the truest expression of responsibility? I push myself when it would be easier to rest. It would be easier to let the world sleep in ignorance. It would be easier to let this all go down as those in power intend.

It's my sons on the bottom though. It's their people, it's every marginalized group, it's all those being forced under that provide the platform which Autism Speaks uses to spread hate. It's on the heads of my children that Autism Daily Newscast spreads misinformation. It's at the cost of Autistic lives that parents lament about the "burden" that is their child. It's years of recovery to overcome the "therapy" Autism professionals prescribe to Autistic people. It's just too damn much. It's what drives me crazy. See the photo above.


Wednesday, March 4, 2015

Neurodiversity, You're Doing it Wrong

ID: small triangles of varying colors make up the background. Black text reads: Neurodiversity is biological, irrefutable fact.

Love, neuroscientist in training -K

You might remember that I critiqued an article about Carly Fleischmann published on Autism Daily Newscast (ADN) a few weeks ago. The other day the same magazine solicited on the Parenting Autistic Children With Love & Acceptance Facebook page, seeking submissions for an upcoming online issue they are working on focused on Neurodiversity. The query mentioned something about our community members have strong opinions. I can't remember because we quickly deleted their post. Why? Again, ADN is doing it wrong.

The title of the current article asking for submissions "Neurodiversity, What's Your View?" is the first red flag. Neurodiversity isn't an opinion. It's a fact. It's actually not a special fact either. It's just like all the other kinds of diversity. As Kassiane said above, this is irrefutable. Our brains are as diverse as our finger prints. Whether or not the Neurodiversity movement is acknowledged is another matter. I am glad ADN is finally recognizing the Neurodiversity movement, but facts aren't up for debate.

Getting past the title, it becomes obvious that ADN hasn't the intention of supporting those Autistic advocates and activists who are promoting the good science that is Neurodiversity. No, ADN instead uses the beginning paragraph to highlight a horrible story that came out recently titled "The Debate Over an Autism Cure Turns Hostile". (Side note, that "Hostile" in the title was "Violent" but due to backlash from the Autistic community it was changed to a more subtlety bigoted word). The article signal boosted a pro-cure Autistic man, who has bullied and abused his way around the Autism Community for years. He's so vile I won't type his name.

ADN uses his point of view as a springboard for this discussion, once again signal boosting his hate, and demonstrating that they are functioning behind the times. Anyone who learns about Neurodiversity from this man's lowly portrayal is so far lost within the cure culture that they haven't the right to be reporting on the subject. In other words, ADN needs to do some research before using their platform. They have chosen the Neurodiversity movement's most obnoxious nemesis and his scathing words, that Neurodiversity is a "scam", to bring the topic to light? It's insulting.

The article does go on to offer opposition to the pro-cure stance, though quoting Julia Bascom, a tireless pro-Neurodiversity activist, did come second, not first. The starting point was hate. The starting point was not acceptance. Julia says another irrefutable fact, "Autism isn’t a disease or an injury; it’s a neurodevelopmental disability that shapes our brains differently." ADN pulled the quote from third article that I will give them credit for linking, They Don’t Want an Autism Cure. I suppose, in order to have a discussion on Neurodiversity, there has to be some opposition to pro-cure agendas.

Then to "balance" out the article, ADN retreats back into the agenda of anti-Neurodiversity man. In an attempt to discredit those fighting for acceptance, to dismiss Julia's statement, they use his quote that Autism is a “divisibility and a disorder and a disease" (they actually misquote him it's supposed to be *disability* not divisibility). This is the exact opposite of what little coverage they actually gave to the Neurodiversity movement in Julia's quote. To be very clear, Autistic people do not deny that Autism is a disability. They do, however, reject the idea that Autism is a disorder and a disease because facts. ADN negated the only good thing in the article.

They then close the article with a video, leaving no debate over whether this is a simple case of ignorance on ADN's behalf, or a willful act against Autistics seeking acceptance. They end with a video interview of anti-neurodiversity-bully-pro-cure-man who's name I won't type, completely bashing Neurodiversity, denying both the science and the social movement. The host demeans Neurodiversity with the tone of her description in the beginning, and continues to poo-poo the movement throughout. It's a blatant display of disrespect from an organization claiming to want to join the discussion on Neurodiversity.

Why am I being so hard on Autism Daily Newscast?

First, both times I have written about ADN, they have approached me. It's not like I went looking for their mistakes. They showed them off. That means little though, the bottom line is they are spreading misinformation at the least, and hate at the worst. They make claims of unbiased reporting, when nothing could be further from the truth. Before getting their bearings in the Autism community, parents like I once was, have to wade through piles of this junk reporting and false information to get to true understanding. Autistic people have to live from underneath these lies, they have to dig their way out just to be recognized as human, when their humanity is a matter of fact.

ADN, you are doing it wrong. You need to do better. Both for the Autistic people you claim to represent and your own worth as a online magazine, you need to do better.

Neurodiversity cannot be discussed out of reality. Catch up.

Sunday, March 1, 2015

Why @MTV Stood With #AutismSpeaks10 Instead of Autistics

Yesterday I was thrilled to find an article written by MTV  "This Autism Nonprofit is looking for a Cure, but some Actually Autistic people aren't happy about it." The link is a memory cache, and that's all we have left because they redacted the article within a few hours. The article was about the #AutismSpeaks10 campaign and how the Autistic community and their allies worked to successfully dominate the conversation for once. To have MTV covering the story was exciting. To see it removed was maddening. I am fortunate to be privy to the details of why, and now I will share this wide open.

Before I do, here is Amy's experience. It's an important read.


My good friend Amy Sequenzia received a request for comment on the article as it was being put together, through personal message on the Boycott Autism Speaks Facebook page. She responded below.



When an Autistic person, especially one that works as hard as Amy does, has something to say, why do we think we can play around with those words and make them suit our purposes? We claim that Autistics have a communication deficit, and yet we pick and choose what we want to hear and how we want to hear it. Amy was well aware this might happen, which is why she was so determined to have fair representation of herself in the article. Amy submitted a comment to Robin Lempel, the author, with the firm stipulation that her words not be edited or reduced. Robin reassured her several times agreeing with her terms each time it was brought up. Sure enough, Amy was wise to be wary.

Shortly before the article was published, as requested, Robin sent a preview to Amy through email. The preview included the full quote. But the published article did not contain the full quote. Amy immediately contacted Robin to ask why. Robin gave her Caitlin Abber's email, as Caitlin was responsible for the editing. They began the following exchange. I do not (at this time) have Amy's first email screen capped, however the text is available now.


Dear Ms. Abber

I was asked by Robin to comment on the article published today about the Twitter hijack of Autism Speaks celebratory hashtag.

I said I would comment, but with the condition that the whole comment be published, no edits.
She agreed.

I also gave her links to articles that would be a good source of information, in case a non-edited quote were not possible. I was not interested in being half-quoted.

Sadly, the article - which is very good - does not have the full quote.

I am asking that this get corrected, either by editing the article, or by adding a footnote to it with the rest of the quote - ASAP.

Sincerely
Amy Sequenzia



Caitlin responded with:




Then Amy responded:



Then:




Instead of removing Amy's quote, as they again promised her, Caitlin took a passive aggressive swipe at the whole Autistic community. She not only silenced Amy, she silenced each and every Autistic person quoted in the article. She silenced the Autistic community, by removing their hard earned collective voice against Autism Speaks. She took down the entire article.

To recap because I know this is complicated;

1. Amy set a precondition that her quote would be used in full or not at all.

2. Robin (the author) said she would honor that.

3. Amy submitted her quote as per the agreement, as well as links to supplement, just incase they did not want to print the full quote.

4. Robin sent Amy a preview of the article where the quote was used in full.

5. Caitlin (the editor) used Amy's words to do as she pleased, breeching the agreement, and published the article with the quote trimmed.

6. Amy contacted them both asking them to correct their "mistake".

7. Caitlin excused her actions, stating that because Autism Speaks had not responded, it was "balanced" to break the agreement.

8. Caitlin made another agreement, to remove Amy's quote.

9. Caitlin again said one thing but did as she pleased, removing the entire article.


It's important to recognize the statement from Caitlin that Autism Speaks hadn't responded to the media request, because it very clearly illustrates how much influence Autism Speaks has. How many news stories have one of the parties being reported on refuse to comment? Many. How many times has Autism Speaks responded to the thousands of individuals, both Autistics and their loved ones, protesting their unscrupulous behavior towards the very people they claim to represent? Never. How are Autistic people ever going to get their side of the story told, if reporters and editors like these at MTV bow down to the powerful Autism Speaks, or worse yet, join them willingly? Somebody please tell me. I don't know.

It was just too much trouble for Robin, Caitlin, and MTV to fulfill their end of the bargain. They mislead Amy until after the story had been published, and then they continued to mislead her with the promise of correction. They did not even attempt to renegotiate before using their own discretion. Before using. Before lying. Before extending any respect for Amy and the Autistic community or considering the good they could be doing in a civil rights movement. They didn't even try. It was just too much trouble to use integrity and far too easy for MTV to use a person.

It was just a story to MTV, to these women. It was something that could be trashed as not important enough, because some petty editor was uncomfortable with being asked to honor her word. Autistic people live it. My Autistic children live it. I live it too. We live knowing the damage that Autism Speaks inflicts. Now MTV has chosen to support them by silencing the Autistic community. MTV knows better now. They know the story but choose to disassociate themselves, as if that relieves them of responsibility to do the right thing. It doesn't.

Robin, Caitlin, MTV, I can never understand why Autism is such a hot media topic, and yet you folks continually silence actually Autistic people and cut them out of their own story. You can still do the right thing. You can still make this better. You can be an ally to Autistics in their struggle to be heard. You can change your mind.


Thursday, February 26, 2015

Division in the Autism Community

Image of a tweet from yours truly. The tweet reads: Tired of the claim that #Autistics & their allies divide the community. Saying no to fear rhetoric is self preservation. #AutismSpeaks10

To begin one of my favorite quotes, from one of my favorite musicians, Peter Tosh.


With my recent post about rejecting the term "Autism mom" I got push back from many "Autism moms". The whole -it's just semantics- dismissal was used. If you have the liberty to make light of language it is because you are too privileged to feel the damage. It's not just semantics when it is you that the world is busy defining in negative terminology. I also got the -you're creating division in the community- dismissal. I heartily disagree.

First and foremost, if you are unaware of the gaping divide between the Autism community and the Autistic community, you've got a lot to learn. The Autism community is comprised of both Autistic people and all those non-Autistic people who are vested some how in the area of Autism. Parents of Autistic children, professionals, teachers, friends, the whole big bunch of us. The Autistic community is strictly Autistic people. The clash between the two groups is what I have been writing about for four years. The divide. The difference. The discrepancy.

The divide is good. It's good because many in the Autism community do terrible things to those in the Autistic community. Filicide, abuse, use, bullying, attempts to "cure" with unsafe techniques, attempts to "fix" with repressive therapies, these are all things that the Autism community inflicts upon the Autistic community. When Autistics say no, they create the boundary with which the divide begins. It's a damn good thing they do this. As I said above, it's self preservation. How dare we do these things to a people, and how dare we insist on peace, while these things are commonplace.

My job, and your job too if you are not Autistic, is to stand in that division. Yes, it's an ugly place. I've said before, it's a lonely place. I stand there to both strengthen the Autistic community's hold, and to usher those from the Autism community into the divide with me. When I write refuse "Autism mom" it is a sentiment I have taken from my Autistic friends, and then offered to the other side. When I defend the murdered Autistic children, when I write about stopping therapy, when I write about the damage that Autism Speaks creates, I am writing in solidarity with Autistic people, and to the Autism community.

I am also writing for my family. I would never know my children standing in opposition to their being. It might be lonely in the middle, my work might not ever be done, but I am doing what every mother does. I am supporting my kids. I could never tolerate the treatment they receive from the Autism community and the larger world. Because they are young and cannot defend themselves, I support their people, who are defending them. My place in the divide is to usher in loving and accepting people, but it is to protect my children from the other side too. I will push back on you if you cross the line with me and mine.

So when you accuse me of dividing the community, I say I don't want no peace. I want equal rights and justice. That's what Autistic people are fighting for, and that's what they deserve. If you don't like division, get in the trenches with me and fight the good fight for our loved ones, for the Autistic community. After all, we all gather in their name. It's the least we can do.



Just an FYI: This tweet is from the #AutismSpeaks10 take down. Autism Speaks is attempting to celebrate their own 10 years of existence and continued dedication to smite the existence of Autistics.  Meanwhile, the hashtag has been dominated by #ActuallyAutistic people and those that love them. Join in the fun. It's the best party I ever crashed!