1. Because she’s fat, and they’re afraid to operate on fat people. (Well, they’d be fine doing much more invasive weight-loss surgery on her, but the less invasive and much more straightforward hysterectomy, they’re scared of. That tells you everything.)
2. They spent a long time eyeing her…
I do think it would be a good idea to let Fletcher Allen, and its oncology department, know that people know about this crap.
The hospital has a contact form at https://www.fletcherallen.org/about/contact_us/
But if you prefer other ways, here are the critical cut-and-pastes:
Laura Tisoncik is an Elder in the Autistic and Neurodiverse communies. Without her efforts, we wouldn’t be nearly as far as we are. Please support her in this time of need. You can find out more about her situation at her post.
They’re telling my friend she can’t get routine cancer surgery…
1. Because she’s fat, and they’re afraid to operate on fat people. (Well, they’d be fine doing much more invasive weight-loss surgery on her, but the less invasive and much more straightforward hysterectomy, they’re scared of. That tells you everything.)
2. They spent a long time eyeing her wheelchair and yammering about quality of life, which is always, when dealing with disability and healthcare and life-saving treatment, a euphemism for “You have no quality of life so saving your life isn’t a priority.”
Once she blogs about it, I’m going to be reblogging the fuck out of it, as often as I can. This is one of my closest friends on earth and she saved my life through tumblr and I’m going to do my damndest to save hers through tumblr.
So once she posts what to do, I’ll be reblogging it several times a day if that’s what it takes, I know how many followers I have, and I know that tumblr saved my life, so it can save hers.
FUCK FATPHOBIC ABLEIST ONCOLOGISTS. JUST FUCK THEM.
After almost a year of grassroots activism, Boycott Autism Speaks has made real progress in revealing to the general public how Autism Speaks works against our community. We have reached out to their sponsors, and saw both Panera Bread and Build-A-Bear Workshop ending their partnerships. We have a long way to go, but have made some significant gains! Our voices are being heard!
Every social justice movement needs the commitment and hard work of many, and we truly appreciate the efforts of each and every one of you who have joined the boycott, called, e -mailed, sent letters and advocated locally for an end to the dehumanizing and harmful rhetoric of Autism Speaks. Together, we are making a difference in the lives of Autistic people. For too long, Autism Speaks has talked about our lives, and the lives of our families in ways that disrespect, stigmatize and exploit us. Together, we are changing that!
Image Description: Background is a brownish color with lighter color brown circles. Left hand side is the Boycott Autism Speaks symbol and on the right hand side is the ASAN symbol. Text reads Join us! Boycott Autism Speaks & Autistic Self Advocacy Network of Washington state are teaming up to protests the Seattle Autism speaks Fundraising Walk Saturday September 27 10 am at Seattle Center . Details at http://asan-wa.tumblr.com/post/97844633835/of-protests-and-boycotts
As we continue to boycott and demand change, we are also very excited to announce that Boycott Autism Speaks will be teaming up with The Autistic Self Advocacy Network of Washington State to protest the Seattle Walk for Autism Speaks on Saturday, September 27, 2014 at Next 50 Plaza, Seattle Center at 10 a.m. . We encourage all who are interested to join us.
For more information:
Of Protests and Boycotts
It’s that time again! Next weekend, Autism Speaks will be holding yet another fundraising walk at Seattle Center, and once again, the Washington chapter of the Autistic Self Advocacy Network will be on hand with leaflets and protest signs, to let everyone involved know that Autism Speaks is a source of harm, not help, to Autistic individuals and our families. And this time around, we’re pleased to announce that we’ll be joined in this effort by a new partner: the grassroots organization known as Boycott Autism Speaks!
What a year it’s been. Last November, the leadership of Autism Speaks doubled down on their fear-mongering rhetoric about autism with a truly horrendous article written by their co-founder Suzanne Wright. True to form, Ms. Wright delivered an overwrought diatribe that portrayed our very existence as a crisis, a tragedy, and an unbearable burden upon our families. This time, however, it seems that the consequences of this dangerously irresponsible rhetoric caught up with Autism Speaks, triggering an enormous backlash of outraged responses, with an unprecedented number of parents and family members joining their voices with those of Autistic self-advocates, to send a clear message that Ms. Wright’s message of horror and despair did not reflect the true experience of our lives. John Elder Robison, the one Autistic person in any kind of token authority position in their organization, serving on a couple of minor advisory boards, resigned his roles at Autism Speaks in protest of Wright’s deeply misguided “call to action.”
This error was compounded when, just a few short days later, it was discovered that a recent Autism Speaks fundraising walk in New York City had provided vendor booth space to the Massachusetts institution known as the Judge Rotenberg Center. The JRC is notorious for their practice of disciplining their residents for disobedience through the use of painful electric shocks, an act of torture that has earned them condemnation from the United Nations for human rights violations. Their barbarism has long served as a painful example of the inevitable consequences of portraying autism as a crisis, tragedy and burden. By promoting the JRC as a valid resource for parents and families, Autism Speaks let the world know exactly where it really stood with regard to the human rights of Autistic people.
In the wake of these egregious offenses, a new grassroots organization coalesced, with Autistic self-advocates and parents of Autistic children joining forces to condemn the actions and rhetoric of Autism Speaks, calling upon their many corporate sponsors to terminate their relationship with the fundraising juggernaut. Pledging not to buy any goods or services from these sponsors until they cut off their donations to the Wrights’ organization, the group known as Boycott Autism Speaks was formed. These tactics were quickly proved to be effective when Panera Bread announced that they would no longer donate to Autism Speaks. Most recently, Build-A-Bear Workshop has agreed to end their partnership with the organization.
The momentum against Autism Speaks continues to build, and more and more of the general public is becoming aware that this organization lacks the legitimacy and the standing to represent the best interests of Autistic people. Now, Boycott Autism Speaks will be joining ASAN-WA on the ground as we once again gather to protest the Autism Speaks fundraising walk at Seattle Center. We encourage anyone who wants to join us in this effort to meet us at 10 a.m. at Next 50 Plaza in Seattle Center, on Saturday, September 27th. Together, we will continue to spread the word that Autism Speaks does not have the authority or the right to speak for us, and that we refuse to let the portrayal of autism as a tragedy dominate the public discourse about us.
Nothing About Us, Without Us!
The first image is a photo of ASAN-WA members at last year’s protest each carrying at least one, if not two signs. The signs read things like:
“Don’t Cure my Identity”, “Neurodiversity is Normal and Natural”, “My Neurology is not a Tragedy”, and “Autism Speaks Doesn’t Want Autistics to Speak”
The second image is of Boycott Autism Speaks’ logo: a light blue and light green background, where the left side is blue and the right side is green. On top of this in a darker green font, it reads “Boycott Autism Speaks”, where, under the word “Boycott” and above the words “Autism Speaks” there is a bolded pastel “does not equal” sign.]
people complain about people “faking disabilities”
you know what happens way more often than people faking disabilities?
people pretending not to be disabled so they won’t get treated like shit
Video transcript, in case you want to just read through and skip to the part where I dump ice on my head. Which is pretty wimpy, because I don’t have a bucket and thus used a bowl. I would love it if people would share this, tweet it, etc.:
My name is Tracey, and today I’m doing a different kind of ice bucket challenge. I want to talk about violence against Autistic people. I am not Autistic myself; I have a sister with Autism. By now you’ve all heard about the incident in Ohio where an Autistic teenager, who thought he was going to participate in the ALS ice bucket challenge with his classmates, instead had urine and feces dumped over his head.
I’m not going to use the word ‘bullying’ or ‘prank,’ here, because I think it is trivializing to say something like ‘prank’ when we’re talking about genuine cruelty. I think this was an assault meant to degrade and humiliate a person. And I’m not going to link to the video that went viral, because I know the boy tried to hide the video from his mother after his attackers put it on Instagram, because he was embarrassed. And although I don’t believe victims of violence have anything to be ashamed of, I still think he deserved to have a say in whether more people saw that video. And so I think it’s sort of adding insult to injury that instead of being taken down, it went viral, and now everyone is tweeting and sharing this video that was very humiliating and that the victim didn’t want out there. So I didn’t watch it, and I’m not going to share the video or link to any article that does.
A lot of people are using this to raise awareness about Autism and what they’re calling bullying. Drew Carey and some other celebrities have offered thousands of dollars as a reward to find the perpetrators, and if the police find them without a reward, which it looks like they will, he plans on donating that money to Autism Speaks. And I’m making this video to challenge him and everyone else to please donate their money somewhere else.
Autism Speaks doesn’t have any Autistic people in positions of leadership. They actually lobbied against a proposed amendment to the Autism Cares Act that would basically mandate greater representation of Autistic people in the groups making decisions that impact their lives.
Only 4% of Autism Speaks’ budget goes toward improving the lives of people with Autism and their families. Most of their budget goes to research, and most of their research money is spent on trying to prevent and cure Autism, not on learning how to enhance the quality of life for people living with Autism.
Autism Speaks uses language that dehumanizes Autistic people. They compare Autism unfavorably to pediatric AIDS, cancer, and diabetes, and basically speak as though if you have a child with Autism, that kid may as well be already dead.
That is the kind of language that justifies violence. In fact, Autism Speaks once did a TV spot, called Everyday Autism, where one of their board members talked about how she used to want to drive off a cliff with her daughter in the car. She said this right in front of her daughter, and the takeaway was supposed to be that this was understandable because having a child with Autism is so difficult. I haven’t asked my parents, but I have never, ever wanted to kill my sister. But parents often DO kill their disabled and Autistic children, and the rhetoric of Autism Speaks, more often than not, is the rhetoric of parents who kill their children; of hopelessness, of burden, of Autism being a plague that needs to be wiped out.
Autism Speaks has given table space at their fundraisers to the Judge Rotenberg Center a school that is under investigation for using painful electric shocks on students, a practice that has been defined by the U.N. As an act of torture. This kind of institutional abuse of disabled students is very common, and Autism Speaks has never really made this a priority. Institutional violence and caretaker violence represents as great a danger to Autistic people as peer violence does, and they come from the same place – the dehumanizing of disabled people, which Autism Speaks participates in.
So as you can see, the legacy of Autism Speaks has not really been a legacy of fighting violence against people with Autism. It’s been a legacy of normalizing violence, enabling violence, and keeping people with Autism from accessing the sort of power and agency that would let them effectively fight violence. Autistic self-advocates have tried to reform Autism Speaks for years, but Autism Speaks has ignored their critiques while continuing to take credit for their work. When you support Autism Speaks, you support silencing Autistic people, and you support the myth that the existence of Autistic people victimizes those around them. That is the language of violence.
People in Bay Village, Ohio are doing some amazing things rallying around this boy who was attacked, and they’re having some great conversations about respect and acceptance of people with cognitive disabilities. It would be such a waste if that awesome energy and that desire to foster respect and acceptance just wound up funneling money into Autism Speaks because it happens to be the biggest Autism nonprofit, when that money could so such amazing things elsewhere.
I have made a donation of forty dollars – and my boyfriend has matched it – to the Autistic Self-Advocacy Network. The Autistic Self-Advocacy Network has a mission of fostering acceptance and creating opportunities for Autistic people. They organize programming at colleges and universities to make campuses more accessible and inclusive. They organize paid internships to give Autistic people job opportunities, they work to give Autistic people more of a role in shaping legislation and policy that impacts them, like the Autism Cares Act that I mentioned earlier, and most importantly, they are active in combating violence and abuse against people with disabilities.
Fighting violence against disabled people and the attitudes that normalize and enable that violence, has always been a priority of the Autistic Self-Advocacy Network, and it will always be a priority of mine. I challenge Drew Carey, Bay Village Ohio, and anyone who shares that priority to give their money to the Autism Self-Advocacy Network or a number of other organizations, which I have linked below, instead of Autism Speaks. None of these organizations are even half as well-funded as Autism Speaks, and ten thousand dollars would be a huge deal to any of them.
And because I feel so strongly about this, I’m going to dump ice on my head now.
About Autism Speaks:
Good alternative organizations:
Autism Women’s Network http://autismwomensnetwork.org/
Autism National Committee http://www.autcom.org/
ADAPT (disability rights organization) http://www.adapt.org/
Practically everyone thinks they’re doing either the right thing, or the only possible thing, at the time.
There are major exceptions but I’m not talking about them here.
This goes back to how we all tell ourselves stories about the world. And in most of our stories, we are the good guy.
I sometimes get into other people’s heads. I don’t know how and I don’t know what I’m doing and I rarely intend to do it. They don’t have to be currently alive. I just have to know a little thing that moves me in the right direction any for a split second I am not me anymore.
There are all kinds of things in there that are very different from me and from each other. People with emotional and intellectual landscapes that, while everyone contains the same component parts, are so foreign it’s amazing to imagine they exist.
But everyone this has happened with, they all thought they were doing the right thing at the time. And if part of them knew it was wrong it was heavily buried under stories. Sometimes deliberately, sometimes not so deliberately.
At some point - I actually remember the exact moment but prefer to keep it private - I realized that whatever knowledge this ability gives me, it does not, not directly, give me knowledge of right and wrong.
Because on any given issue, including issues that are quite dear to me, I’ve seen into the viewpoints of people on all sides of them. Not just the words and ideas, but the memories and emotions and live experiences that lead each person to be certain they are right. And from the point of view of inside that person, every single person is incredibly persuasive. None more than the next.
And that is what is the same in everyone who has a sense of right and wrong at all. We all have experiences and thoughts and emotions that tell us what we think is right. We all(*) have stories we tell ourselves, that we get so caught up in that we mistake them for reality. And all these things combine to give us an idea of what we think is the right thing to do. Our to justify our own actions to ourselves.
So in a less direct way, this ability does tell me something about right and wrong. It tells me I am as untrustworthy as any other person to figure it all out on my own. I mean most people agree on the basics, but when it comes to the complicated execution in real life situations? We all have different ideas and many times those ideas serve our own biases, stories, specific life experiences, and hidden motivations.
Sometimes what I see scares me. I’ve seen into the mind of someone who got fired up with righteous anger and a lifetime of injustice and played with some really dangerous symbolism, started a movement… People died. He’s not famous. Few people outside the movement know his name. But as I was learning about it that thing happened… And suddenly for seconds at a time I felt like I was him or some of the people around him and I got caught up in the emotion of the moment and I wanted what they wanted and then… I was on the outside again, myself again, knowing the outcomes of their actions, that may have been avoided if they were not so sure they were right.
That kind of thing gives me whiplash.
I know, I’m autistic, I’m not supposed to do this, but from what I’ve seen, intense involuntary empathy, of many kinds including this, is a feature of being autistic for many of us, no matter what the experts say. I can’t voluntarily put myself in someone’s mindset, but I often find myself there.
And in the aftermath of the attempted murder of Issy Stapleton, I find myself really really upset at all these autism parents who call for more empathy any time someone says that murder is absolutely wrong and that judging or condemning it is a terrible thing.
Luckily, I have not seen inside the mind of Kelli Stapleton. I’ve seen the edges, and the storms, and I don’t want to see it from her perspective. I would want to wash my brain out afterwards.
Some of her supporters are right about one thing, I think, but totally wrong in the conclusions they draw from it (and probably wrong in the ways they come at it too, but that’s a finer distinction).
It is, I think, actually true that put in the right position, most people would find it possible to kill and to feel right about killing even when that killing is a hundred prevent wrong.
The fact that I could see myself getting mind warped enough to kill, does not mean that the right thing for me to do is sit around at every murder extending sympathy for the murderer.
Because… How do I even try to explain this? Killing another human being is something hardwired into most human beings as a really bad idea. Most people have a really thick barrier between themselves and murder. To become a murderer, they have to erode that barrier down more and more and more and more until they can do it. (And once it’s done, they have an incredibly hard time putting it back up. One murderer likened it to having a wild animal loose in your brain that you have to restrain.)
Lots of things can erode that barrier. Some things are so powerful they can smash it down all at once. Other things pick at it piece by piece until they finally chip through to that other side.
But that means there are people whose barrier to murder has been chipped down to an inch thick. And that means that anything that chips down that barrier even an inch is a danger to their potential victims.
Some things that I know erode that barrier:
* Seeing murder of a certain class of person as more understandable or acceptable. That includes disabled people.
* Saying that murders occur because parents of disabled children don’t get services. There’s a proven correlation between media coverage of this sort and an increase in murders.
* Public sympathy with murderers of a certain sort, such as parents who murder disabled children.
* Saying it’s understandable for parents of disabled children (or of disabled violent children, or of disabled children in certain specific situations) to murder those children.
* Dehumanizing the victims
Every single one of those things erodes the wall between being a potential murderer and a real murderer. Every single one of those things is a serious threat to disabled children. People who say any of those things are, knowingly or not, endangering disabled children. And adults. But children are usually more threatened.
And if empathy with most killers is your thing? You would not be so hell bent on destroying those walls in their heads. Because they will have to live the rest of their lives with the consequences of having killed. And those consequences are not pretty. Shattering that wall shatters important parts of the self. Very few people can recover.
That’s of course nothing compared to the devastation that happens to the victim. But it’s still devastation. And anyone who had an ounce of actual empathy (including actual understanding) for people who have killed people, would not be focused on making that person’s actions seem understandable. Because that is just setting up the same tragedy the murderer and their victim and their families just went through. Eroding a wall. Anyone with an ounce of understanding of how that wall gets eroded, would back off in horror at the very thought of eroding it in another.
Many of the people calling for empathy are not actually people understanding what happened or how it happened. They are people whose walls are partially eroded themselves, who can see that if that (few feet, few inches, few millimeters?) of wall were gone in themselves, they would have done the same thing. And since they can’t see themselves as bad people, they say “she is not a bad person”. And in doing so they erode more and more people’s walls. I still remember the two or three murders that happened the WEEK “Autism Every Day” came out, don’t tell me that’s coincidence.
Saying that murder is wrong and inexcusable. Saying that disabled children are not acceptable targets. Saying that extending this twisted brand of understanding to child murderers is dangerous. THESE ARE WAYS WE KEEP WALLS AGAINST MURDER INTACT AND BUILD UP WALLS THAT HAVE BEEN DAMAGED. Condemning murder builds up walls in ourselves and in other people. We need those walls to keep those on the edge from stepping over the edge. .
Most of what people are calling empathy here is just self-pity. And self-pity erodes those walls and warps the conscience to believe the feelings of would-be murderers are more important than the existence of their victims.
True empathy for either murderer or victim would have you doing anything you could, anything at all, to prevent anyone’s internal walls against murder from eroding any further. Knowing that most of us are capable of murder should only strengthen that desire, not weaken it. It’s the near universal desire to believe oneself a good person no matter what one does, that gets people so twisted up that they would erode those walls further rather than admit, “we are all capable of terrible things, and that means we need to strengthen these walls to prevent them happening, whether it’s murder or something else”.
And if you’ve never seen the horror and betrayal from the POV of the victims… Don’t tell me I lack empathy.
I love you Issy.
(*) Except a tiny number of people who have managed to destroy stories, and the mechanisms that create them, forever. They are rare, I am not one of them, and I have had only the tiniest glimpse into the mind of any of them, which stunned me to the core. Because I could see in one tiny instant the enormity of the difference between him at that point in his life and me at this point in my life. And that was… As if my mind is full of layers upon layers of machinery, never noticed in full until I saw its absence in someone else. And when I saw that difference, I saw why people didn’t believe him when he tried to talk about it. But people like him are still fallible in all kinds of ways that don’t have to do with stories.
Free speech includes the right to set editorial policy
Freedom of speech and freedom of the press are about having the right to choose what you say. Part of this means being able to say what you want to say; an equally important part of free speech means the right to refrain from saying things you *don’t* want to say.
And, in a broader sense, this includes editorial policy. If you publish a magazine, you make choices about which articles to include and which articles to reject. That’s an essential part of what a magazine is. A magazine has a certain topic and point of view, expressed as much in what it does not publish as what it does.
- Socialist journals do not publish articles in defense of capitalism
- Medical journals do not publish articles that have not passed peer review
- Jewish community newsletters do not publish arguments for conversion to Christianity
The fact that these types of publications only publish things that support their mission and policy is not a violation of free speech; it is an *expression* of free speech.
This is as true on the internet as it is in print media.
Deciding what to put on your website, and what *not* to put on your website, is part of how you exercise your free speech. That includes things like:
- Posting about things you want to post about
- Not posting about things you don’t want to post about
- Responding to responses to your writing that you want to engage with
- Not engaging with responses you prefer not to respond to
- Making decision about whether you want to have comments, and if so, which kind of comments to allow
No matter what choices you make about these things on the internet, someone will accuse you of censorship and insist that their right to free speech means that you have an obligation to publish their opinions. It doesn’t. Their right to freedom of speech is about what *they* say; it does not give them the right to make *you* say anything, or to publish them, or to pay attention to them.
Free speech means you have the right to say what you want to say, and to refrain from saying things that you do not want to say.
Anonymous said: I feel so useless sitting here. What can I do to help Ferguson??
national moment of silence 2014 (for victims of police brutality)
share the following:
"no one can love you until you love yourself"
that is complete bullshit
don’t let anyone tell you that you don’t deserve love from other people because you struggle with loving yourself
Official Twitterbomb at Washington Post
I started tweeting yesterday and I’d like everyone to start tweeting with me at the Washington Post (@WashingtonPost) over their article (tw at link: ableism, violence, seclusion, abuse) “Coping with adult children’s autism, parents may face ‘least bad’ decisions.”
In addition to @WashingtonPost, we will be tweeting at:
Executive Editor Martin Baron: @PostBaron
the Health Section of the Post: @PostHealthSci
the Local section, where the article was published: @postlocal
the journalist who wrote the article’s professional account, Dan Morse: @morsedan
I wrote a post (tw at link, ableism, violence, seclusion, abuse), “Complicit Narratives,” concerning the extremely troublesome aspects of the article, which sympathizes more with abusers than the victims, if you need more information.
We will tweet today and tomorrow using the hashtag #WPComplicit
Here are example tweets I have done so far, without the hashtag:
Tip: add a period “.” before the @ so your followers can see the tweets!
Queerability Statement About Jane Doe in Connecticut
Queerability, a leading LGBTQ and disability rights advocacy organization run by and for LGBTQ people with disabilities, expresses our profound concern about the Jane Doe case in Connecticut. Jane Doe is a transgender teenage girl with a psychiatric disability who has been moved from a psychiatric treatment facility to a juvenile detention center for boys in solitary confinement without trial due to violent behavior. The forced institutionalization of Jane Doe is incongruent with the Olmstead vs. L.C decision.
We urge the Department of Justice to take action and conduct an investigation. We also call on other LGBTQ and disability rights advocacy organizations to speak out on this critical issue.