12:08am January 9, 2015

Seven Deadly Words.

(Content warning for abuse, homicide, disability institutions, prisons, police, deadly ableism, deadly racism, suffocation, and violence.)

As an IRC channel manager I get to see other things, too. I get to see the carnage wrought by years of "help”– not just in people my age, who were supposedly misdiagnosed and mistreated, but even in young teens. Ever want to clear out a room full of autistics? Start discussing restraints. But don’t do it unless you enjoy watching a lot of people have PTSD flashbacks. If you think this was all done for our own good, think again. I still have scars on my body, 30 years on, from having been beaten by hospital staff while restrained and drugged to the point where I was unable to sit up for three days. A friend of mine– a 19 year old, so this was not back in the Bad Old Days– tells stories of being restrained face-down, and the staff watching and laughing as she began to suffocate. And if you go peruse the Oasis web board online right now, you can read about a mother upset because her 16 year old aspie son was locked 4 days in a hospital “quiet room” for refusing medication. No, she wasn’t upset at the hospital, staff or doctors– she was upset at her son!

56 notes

9:36pm September 24, 2014

What I now know about fat women and endometrial cancer

webmuskie:

Yes, abdominal hysterectomies have poorer results. But research shows we do very well with vaginal hysterectomies.

But, tres surprise, we’re not often offered them.

We have a poorer response than thin people to radiation (more shielding. The day after the apocalypse, we’ll be the only ones standing ;) ), which, surprise again, is what lots of fat women get offered. But not all. Many fat women are told that they’re too fat for any treatment.

Also surprise: We have a higher mortality rate from endometrial cancer. I’m … shocked.

89 notes

6:21pm September 23, 2014

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.

1,776 notes

3:44am August 9, 2014

A little over a year ago, they told me they didn’t think I could care for a feeding tube, so I should try death instead.

arctic-hands:

youneedacat:

Right now?

I just got back from the same hospital, where they knew nothing, nothing about caring for feeding tubes.  It wasn’t their fault, they had no particular training.  But in another week they’d have blocked it worse than any clog zapper could get through.

I don’t know how to explain the rage that happens when someone is messing with such an intimate part of you, and not giving it the care and respect it deserves, and yet you can’t even blame them because they haven’t been taught any better.  These were great people with bad education.  But it hurt so bad to see them mistreating my tube, which I’ve grown to love like it’s a family member or something.  It’s a part of me now.  I feel like it’s alive and that mistreating it is mistreating a living thing.

And I think it’s happier after tonight’s work with it.

And I’m happier to be the one working with it again, I did so much to make it happy again.

A happy tube is a useful tube but also my relationship to my tube means a lot to me.  When it’s happy I’m happy, and I feel like we communicate to each other.

And I know more about taking care of a tube than any of the experts who decided I couldn’t possibly take care of one so I should choose death.

Joke’s on them, I guess.

“A little over a year ago, they told me they didn’t think I could care for a feeding tube, so I should try death instead.”

What?

Oh you missed the Tube Wars?

Here’s a summary:

http://ballastexistenz.wordpress.com/2013/05/02/feeding-tubes-and-weird-ideas/

But basically, my DPA got on tumblr and kicked ass for me.  And tumblr combined with Not Dead Yet saved my life.  Literally.  By phoning and emailing what must have been hundreds of times to the hospital telling them that they were watching how they treated me.  And I got my tube the next day after the phone protests started.  It got so bad that when someone emailed, without even giving my name, asking “Do you have a non-discrimination policy against disabled people?” they got a reply mentioning me by name and saying that I was being given the best possible care.  According to an informant within the hospital, everyone from the suits at the top of the hospital to the nurses on the wards were talking about nothing else but the online protest for days.  But it got the job done, they stopped pestering me about death. 

(The situation was, they couldn’t deny me the tube outright because it was medically necessary, so every day, while I was severely weakened by pneumonia and completely exhausted and had very little fight in me, they’d come into my room and try to tell me why it would be best if I refused the feeding tube.  Sometimes I got them to admit the only alternative was death and they’d still say I should consider that alternative.  Other times they were more vague.  But it was always “Go home and die” at the back of what they were saying.)

I am still incredibly thankful to everyone on tumblr who called or even thought of calling or signal boosted on my behalf.  Some people called who had serious trouble making phone calls, and that means a lot to me too.  That was an example of one of my more nightmarish hospital stays, because I wasn’t just having to fight my body to stay alive, I was having to fight the doctors to keep me alive rather than let me die.  And then after that I was having to fight for basic, basic medical care that my roommates were getting but I was not, such as pain control after the procedure.  Every time I saw how my roommates were treated, I became furious, because they treated them like human beings and I was not a human being, clearly.  Cognitive ableism in action.

This is why I am so amazed when I have hospital trips like my last one, where everyone is fighting to keep me alive, and everyone is nice and respectful.  Normally either the doctors, the nurses, or both, are disrespectful.  (Usually I get along with nurses better than doctors for whatever reasons.   Maybe because they’re more down to earth.)

35 notes

11:37pm July 20, 2014

Another hospital stay, another experience of ableism.

Another hospitalization, I was vomiting uncontrollably and had collapsed on my bed due to some combination of myasthenia and an adrenal crisis.  I knew that I was going to die if I didn’t get monitored more than I was being monitored.  Instead of monitoring me more, they evacuated my room, shut the door, and ignored my call button.  The sound of my vomiting, they said, upset their nice quiet ward.  I shit the bed because I was too weak to get onto a bedpan.  They said that I could not be allowed to shit the bed, because if I did so, I might get used to it, and might never use a toilet again.  I had already begun hallucinating, but I managed to curl myself into a position where my vomiting was least likely to choke me.  Then I collapsed completely and went into a delirious, hallucinatory state where I felt like my body was disintegrating and flying out the window.  In lucid moments, I wondered if this was what dying felt like.  

My hospitalist was informed of my state, and replied that he was only there to treat my pneumonia and that my other conditions, including not having eaten more than broth for weeks beforehand, including possible myasthenia gravis being aggravated by the vomiting, including all the symptoms of adrenal crisis, were no concern of his.  There was an argument about whether I belonged in the ICU, and he said that since he was only treating the pneumonia and nothing else, I didn’t need the ICU.  My GP tells me that I am lucky to have survived without the ICU, and that I absolutely belonged in the ICU that and many other times.  The fact that I’ve been denied access to the ICU when I’ve needed it has always been pure ableism, and this is the kind of ableism I deal with on a regular basis.

Many times, hospitalists see people with multiple, complex disabilities and decide that they are only going to focus on the disease we are there for.  This means we get less adequate care inside the hospital than we get outside the hospital, which seems ironic.  This doctor literally did not care that I had not eaten for weeks due to undiagnosed gastroparesis, which was later diagnosed during the hospitalization, after more weeks without eating.  He was not concerned about my neuromuscular junction disease that made me weaker every time I vomited, including weaker breathing.  He was not concerned with signs of adrenal crisis.  He was not concerned about controlling the vomiting that was created by the drugs he was giving me for the pneumonia.  He was not concerned that I had fallen into a quiet delirium, the most dangerous type of delirium.  All he cared about was that someone come in and change my IV bags once in awhile, that they keep my IV flowing at least semi-properly (ended up with a PICC line), and nothing else.  Nothing is so lonely as being delirious and alone in a ward where they are doing their best to ignore your existence.  And it was ableism that created this whole scenario, ableism that said “Let’s ignore hir doctors, let’s ignore hir disabilities, let’s ignore hir power of attorney for healthcare, let’s pretend all hir disabilities don’t exist except for the pneumonia.  Even if it kills hir.”

23 notes

11:00pm July 20, 2014

Near-death by ableism by denial of medical care.

I almost died last year because of ableism.  I was in the hospital.  They didn’t want to give me a feeding tube because, they said, I would have no quality of life with a feeding tube.  They acknowledged that life without a feeding tube would eventually kill me, from starvation or aspiration pneumonia, whichever got me first.  I luckily had the power of tumblr and the Internet behind me, calling the hospital and telling them they were being watched.  Suddenly I got my tube.  But not before being put through hell and back.  And without the support of those people online, I could easily have died in there.  They knew I needed the tube, because they didn’t deny the tube, they just tried to talk me out of it.  If I hadn’t needed it, they could have just denied it.  Instead, they did their level best to talk me out of a life-saving procedure.  And that is the kind of ableism that I live with every day.

When I went to the hospital that time, they said that because I had a developmental disability, then they would not admit me unless I had 24-hour staffing from the local DD services agency.  They had no reason for this request.  I had never required more care than non-DD patients.  The only reason they did this was prejudice, and once we called Patient Relations, they rapidly withdrew their demands.  And that is the kind of ableism that I live with every day.

By the way, I love my tube.  I have loved my tube every day since I got it, complications and all.  My tube is my friend.  My tube is how I get food, medications, and water.  My tube is wonderful, most of the time.  But even people who only grudgingly like their tubes, or resent their tubes, still generally want to be alive.  And ableism keeps a lot of us from ever getting the chance to try the tube.  Even though the procedure is completely reversible, even though the procedure does not interfere with normal eating, somehow getting a GJ tube is seen by doctors as a death sentence.  I prefer to see it as a ticket to life, for as long as my life will stand up.  I love being alive, and the assumption that I wouldn’t love being alive if I had a tube, that’s ableism all over again.

19 notes

4:21pm July 17, 2014

I’m looking through reviews of “Tuesdays with Morrie”.

Which is honestly just as bad as reading the book would be (I know I would hate this book, I don’t need to read it to know that, it’s sappy inspirational glurge).  But I’m looking for a particular quote from a review, that I wanted to use in a post.  But by now there’s so many reviews that I have to slog through all of them.  I’m only reading the negative reviews (because that’s what the one I am looking for was), and I actually agree with most of them.

But then I run into one that says that if Morrie (a professor dying of ALS) was as caring and selfless as he said he was, then he would give all his money to starving children around the world, rather than use it for caregivers.  Basically, this reviewer is saying that it’s selfish for a disabled person to spend money on staying alive, because other people are worth more than the life of a disabled person, and disabled people are expensive to take care of, so we should all just die already.

I’ve been told this before myself, that I’m selfish for being alive, and even more selfish for having a living will stating to keep me alive at all costs.  I remember during the Terri Schiavo case – and it doesn’t matter what side of it you were on, this was a hideous thing to say – people were saying things like “Only in America would we spend money keeping a vegetable alive when there are nondisabled people all around the world who are dying unnecessarily.”  

I really didn’t need that slap in the face right now, that little reminder that my life isn’t supposed to be worth as much as the life of the nearest nondisabled person.  That spending money on me is selfish but spending money on nondisabled people is good.  That my existence is a product of capitalist greed gone wrong.  That medical technology (like my feeding tube) keeps people alive today who shouldn’t be, and how this is a horrible drain on resources.

Can people stab the knife in and twist it any more or are they done yet?

18 notes

6:16pm July 11, 2014

“A society that sees murder as kindness for those who are disabled will not care much if one is otherwise brutalized.”

52 notes

4:54pm July 11, 2014

“Yesterday I chatted with folks with disabilities. Four had Down Syndrome. In a flash, I realized that this may be the last generation of people with Downs. These who love, laugh, who experience pain and hope, are genetic undesirables. These a German dictator once denounced as useless eaters. These would be gone soon… a medical victory saving them from the pain of existence. Ah, hiding bigotry behind compassion is a wonderful trick.”

218 notes

12:43am July 1, 2014

dendriforming:

I can’t reduce life or death situations to a philosophical principle or two. I don’t think setting aside context is admirable.

“This person said they would rather die than burden their family if they developed dementia. Now they have dementia and want to live. Should they continue getting food?”

“This other person said they wanted to be kept alive, even if they were in pain and indicated otherwise. Now they’re saying they don’t want to be alive. Is assisted suicide okay?”

“If you say no to the second, but yes to the first, you’re inconsistent. They’re exactly the same situation.”

And… there’s a level of abstraction where you can make that make sense. But the automatic assumption that that’s an appropriate level on which to make life-or-death decisions is the thing that bothers me most about medical ethics.

I don’t like the way that people are given these things as thought experiments in medical ethics, with no training about their own biases or the biases of the medical profession.  Even though those biases are upheld by a lot of peer-reviewed, replicated research.  (No, I don’t have cites on hand, my mind doesn’t work that way.  But I know it exists.)

These are situations where you have to be in the situation.  You can’t abstract a few facts out of the situation and expect people’s judgement to make any sense.  These are situations where the entire world, at one moment in time, is part of the decision you are making.  These academic philosophical types love to ignore context, to make things ‘purified’ by removing the heart out of the world and leaving the superficial remains.  And they think this is deep thinking.  It’s the shallowest possible way to think.

And cognitive ableism boy is it everywhere.

31 notes

4:32am June 11, 2014

➸ This Way of Life: Murder of Autistics (Autistic History)

Every kind of content warning possible for murder of disabled people, if you click on the above link (which goes to an archived copy of the website) or read this post.

But it scares me how fast people have forgotten this page.

Including people who have compiled a lot of their sources from that page originally.  Who have forgotten this page, or at least not mentInioned it.

This page was put together by Joel Smith.  He and I did 100% of the research involved.  Nobody helped us.  Lots of people hindered us.  This research involved trawling through years of horrible, gruesome news stories and cataloguing everything about them.  Hunting down detailed information about the victims, and the perpetrators, and exactly what was done to them.  Details you wouldn’t want to know.  Details that you would vomit if you knew.  And then making this list in remembrance because we thought that it mattered that much.

There are some things where I am ambivalent, or don’t even care, about who remembers who coined a phrase, who did certain work.  But I care very deeply that in all the latest incarnations of lists like this one, Joel and I are not credited for the work we did or the flaming we suffered.  Sometimes we had families of the murdered children writing to us saying we didn’t understand, that if we did understand we’d side with the murderers.  I’m sure if you’ve written such a list yourself, you’ve eventually gotten similar stuff.  But it’s horrible.  And we went through horrible things on every possible level to put this together.  And it would be nice if somewhere, even in a tiny tiny corner somewhere, when these lists are being discussed, someone said that Joel Smith did it first with help from Mel Baggs.  Because this is one area where I can say that not only did our work matter, but the suffering that went into that work mattered as well.

It was like creating a graveyard.  An online graveyard.  For people that we knew, could just as well have been us.  For people we cared so deeply about that we lost sleep over their stories.  We had to read detailed descriptions of mothers who tried to kill their kids in three different ways, over and over it not working, begging their kids to just let go and die already, and when the kid was finally dead, the society rallied around the murderer and got them not a sentence for murder but a suspended sentence for manslaughter.  

Understand also that neither Joel nor I believe that the criminal justice system actually provides justice.  But it is meaningful – and it can't not be meaningful – the discrepancy between sentencing for parents who murder nondisabled children, and parents who murder disabled children.  And it’s meaningful that our societies rally around these murderers.  And it’s meaningful that this is, as far as we can detect, a worldwide phenomenon – limited by our own linguistic abilities, unfortunately, but we have tried to look into it as far as we can, and we can’t find a country where it’s better for disabled children who have been murdered by parents and caregivers.

I am willing to bet that any largely-disseminated list of autistic people murdered by parents and caregivers, ties back to this list in some way, because we were the first people to do it, and for many long years we were the only people doing it.  I don’t know how Joel feels, and I don’t often demand credit even when I want credit.  But this is something where I feel very strongly that Joel Smith and Mel Baggs should be names associated with any subsequent lists, as the people who created the first master list, which was the most horrible labor of intense love and grief that either of us has ever experienced.  This isn’t just an article we churned out.  This was people’s lives, one by one, overwhelming us some days to the point where we could barely communicate with each other about the matter.  This was people who could’ve been us, could’ve been our closest friends in the world, could’ve been our family members, could’ve been our loved ones, could’ve been our significant others.  Could still be us.

I’m sure that anyone who has ever worked on a list like this knows the feeling.  And I’m sure that nobody meant to leave us out.  And I’m sure people will understand why we might want to have even a small bit of credit given to us for being the first to put something like this out there.

The earliest archived edition of this page I can find (on an earlier version of the website) is for April 10, 2003.  But it might go back further than that.  That’s only when the Wayback Machine first found it.  But I can remember clearly the day it went up. I can remember the work that went into the first version.  I can remember the work that went into continuing it.  Every time we heard of a new murder, past or present, it was “oh God it’s another one, please no”.  And then we’d have to learn all we could about it.  Have to.  Because we were the ones making the only existing memorial to murdered autistic people.  There was nobody else.  It was do it, or leave them unremembered.

And that’s why credit can matter.  I feel stupid asking for credit for the both of us, I feel selfish (especially given the focus is and always should be the people who were murdered), and yet I also feel justified, given what we went through to put this together.  Joel and I have both survived attempts on our lives.  This is major PTSD territory.  That we did it anyway means how much we cared.  I know there are new lists today.  I know they are somewhat different.  But I think somehow, this old list needs to be remembered and honored for what it was (including the source of many names and information for the new lists), including credit to the two people who made it.

Otherwise it feels to me like one more piece of history disappearing into the dust, and two more people’s work forgotten.  Nobody was compiling this kind of a list, in 2003.  Except us.  There were a lot of firsts for the autistic community, in the decades between 1985-2005, and this may not have been one of the more pleasant one, but it happened.  And those firsts have a habit of vanishing into everyone’s collective memory black hole after only a few short years.

162 notes

4:38am June 7, 2014

~Oh but disability hate speech doesn’t exist.~

That’s why total strangers have called me a mong, told me I should have been drowned at birth, and told me that I disgrace my family and that my family only pretends to love me.

~But nobody actually hates the disabled, you understand.  The only ableism that exists is language, everything else is just stuff we make up to whine about.~

~Because casually throwing in references to infanticide are just what people do, they don’t have anything to do with millenia-long practices of infanticide of disabled children across cultures around the world.~

42 notes

3:38pm June 6, 2014

quixylvre:

youneedacat:

girljanitor:

goldenheartedrose:

girljanitor:

goldenheartedrose:

timelord89:

SHIT!!!!!!!!!! That’s it any time I see anyone trying to donate to Autism Speaks, I am literally going to do my best talk them out of it. Why the hell would they think it is okay to put this in a video? I fucking hate it when parents murder their disabled children and people actually feel sympathy for those pricks, this is dangerous shit.

You should also know that three weeks after this video aired, a mother DID murder her autistic child. I’m not saying that this video was the cause, but it was widespread enough to be the tipping point.

Also, if you want an Autism Speaks reference to pass along, here you go: http://goldenheartedrose.tumblr.com/anti-autismspeaks

This is what Autism Speaks does.

Makes a video of a mother talking about how she wanted/wants to murder her autistic child, and she says, “The only thing keeping me from doing it is having a child.” (She’s talking about her other Allistic daughter, not the one that’s right there in the same room with her.)

The effects? Here’s the dedication from ASAN’s recent book of essays:

If I’m not mistaken (and I might be), the person I referenced was Katie McCarron.

I cry every time I read that list. That is Autism Speaks’ legacy (along with all the abuse, particularly of the JRC). That isn’t to say there weren’t organizations before A$ that did the same things. There WERE. Ableism is prevalent and pervasive in our society. But this is the message they’re sending - your life is tragic, your life is unworthy. Better off dead than to be autistic.

Yes, really.

Bolded for truth.

holymotherofrowling also put together a pretty impressive post with a few details and quotes on the media depiction of these murders as well as responses from the murderers themselves:

holymotherofrowling:

These are just some of the autistic people murdered by their parents, caregivers, and others entrusted with their care (their killer is in parenthesis - I put that in because it’s easier to find the cases if anyone feels the need to check my facts or something).  This needs to stop.  What’s almost as bad is reading the comments on the articles about these cases and seeing parents saying that these murders are “understandable.”  Murdering your kid isn’t understandable.  This is just one of the reasons I hate Autism Speaks - they perpetuate the idea that autistic children are just burdens, which is incredibly dehumanizing.  And dehumanizing us makes people consider us less of a loss.  We’re not burdens.

• Ryan Davies (Alison)
• George Hodgins (Elizabeth)
• Mason Scott (Christie Michelle)
• Matthew Goodman (staff of The Lindens Neurobehavioral Stabilization Program)
• Kenneth Holmes Jr. (Micaela Jackson)
• Terrance Cottrell, Jr. (Rev. Ray Hemphill)
• Stephanie Jobin (staff of Brampton group home)
• Brahim Dukes (Dewey Gillespie)
• Casey Collier (staff of Cleo Wallace Center)
• James Joseph Cummings, Jr. (James, Sr.)
• Jason Dawes (Daniela)
• Marcus Fiesel (Liz and David)
• Unnamed 7-year-old daughter (Unnamed mother in Martigues, France)
• Joseph, Charles, and Everett “E.J.” Conant (Everett)
• Zain and Faryaal Akhyer (Saiqa)
• Lillian Leilani Gill (Sharon)
• Daniel Leubner (Michelle)
• Justin Malphus (Joyce)
• Patrick Markcrow (Wendolyne)
• Pierre Pasquiou (Annie)
• Jacob Grabe (Allen)
• Tony Kohr (Seow Cheng Sim)
• Charles Mancill (staff of group home)
• Chad Jackson (Yodi)
• Abubakar Nadama (Physician trying to “cure” his autism)
• Mark Owens-Young-Rogan (His mother)
• Glen Freaney (Yvonne)
• Casey Albury (Janine Albury Thomson) She said after: “I did it. I strangled my daughter. She was a misfit. People were scared of her because she was different. I wish it could have been quicker. I’d wanted to kill her for a long time.”
• Angelica Auriemma (Ioanna)
• Eric Bland (Delores Johnson)
• Dale Bartolome (Delfin)
• Gabriel Britt (Terrence and Renee)
• Katherine McCarron (Karen)
• Jeremy Fraser (Kristen LaBrie)
• Tiffany Pinckney (Alison Cox)
• Jude Jordan (Gigi)
• Ulysses Stable (Jose)
• Wayne Winter (staff of group home)
• Unnamed 9-year-old boy (Denise Snyder)
• Benjamin Barnhard (Margaret Ferne Jensvold)
• Chase and Olivia Ogden (Rene)
• Michael Renner-Lewis (staff of Parchment High School)
• Christopher Melton (Tracy Hawks)
• Rylan Rochester (Stephanie) I find this particularly disgusting: “She said she felt she and her husband couldn’t have fun while caring for a severely autistic child, according to the affidavit”
• Benjamin McLatchie (Daniel)
• Matthew Vick (staff of group home)
• Willie Wright (Southwest Mental Health Center)
• Walter Knox Hildebrand Jr. (Stuart Allen)
• Jeremy Bostick (Jeffrey)
• William H. Lash IV (William H. Lash III)
• Ajit Singh-Mahal (Satpal Kaur-Singh)
• Charles-Antoine Blais (Danielle)
• Christopher DeGroot (Nicholaas and Agnes) - He was buried alive and his parents only received 6 months in jail)
• Daniel Corby (Patricia)
• An 11 year old boy in NSW: http://au.news.yahoo.com/local/nsw/a/-/local/13658708/man-and-woman-charged-with-childs-murder/

And then of course, no matter where you go, you’ll see something like this image, along with an article ABOUT “MOTHER-BLAME”, which I happened to come across looking at a website called sociological images:

Mothers often felt that they were their child’s only advocate, with his or her health and future dependent on making just one more phone call, getting one more meeting with an expert, or trying one more school. Accordingly, they were simultaneously exhausted and filled with guilt.  I wondered, when I came across this Post Secret confession, if this mother was experiencing some of the same things.

BECAUSE APPARENTLY MURDERING YOUR DISABLED CHILD IS SOMETHING FEMINISM NEEDS TO DEFEND, FOR FUCK’S SAKES?????

um, guys? It wasn’t just Katie McCarron who was murdered immediately after the video. There were at least two others, including an autistic man whose parents locked him in the house and set it on fire. Unfortunately, not being young and cute and having a giant movement behind them, practically nobody remembers this. I can’t even remember their names because I didn’t hear them repeated a zillion times like I heard Katie’s name repeated. They didn’t have grandparents who went public and stood up for them. They had nothing.

The mother in this video has never acknowledged what she did and the effect it had on other people. It would still be possible for her to redeem herself, if she were to acknowledge what happened and dedicate her life to undoing as much damage as she can. Some can never be undone, people are dead, but she could be working to make sure that nobody thinks it is okay for parents to kill their disabled children. There is so much she could do from her position of authority. But all she does is complain that she was misunderstood, that it was a suicidal urge (and therefore the homicidal elements don’t count, because killing your kids is part of suicide?), that autistic people who won’t automatically give her a pass for what she did are horrible unforgiving ungrateful people who don’t understand her and don’t understand what parents go through and are just terrible people in general. And taking that stance, she is still doing the damage. This video is trotted out to defend murderers of autistic people.

After this video came out, an article also came out that said that every parent of an autistic child, if they were honest, has thought of murdering us from time to time. My mother was so upset by this that she sent me an email that seemed desperate to let me know that I had always been wanted, that even when doctors wanted me aborted she chose to have me, that she’d never wanted to murder me. I am still furious that anyone made her feel like she needed to say all that to me.

I’ve experienced people trying to kill me for being disabled. Not my parents. But people. In a mental institution they once let me know I was a waste of space and that they weren’t going to stop a pseudo anaphylactic extrapyramidal reaction that was making my throat close up. If someone hadn’t come by and saved me I wouldn’t be here. More recently, doctors acknowledged that I needed a feeding tube to survive — and then attempted to persuade me, day in and day out, while I was very sick with pneumonia and exhausted and not up for a fight, that I shouldn’t get the tube. According to my pulmonologist they only changed their minds after people from tumblr started calling the hospital and demanding they treat me right and saying the world was watching what happened to me. Now some of the same doctors are trying to say that I’m unable to take care of my tube, and I fear that if it comes out again or clogs again I will have a bear of a time getting them to replace it properly. It’s a constant struggle to prove I have a right to exist, and videos like this absolutely do not help.

If my parents were so inclined — fortunately they are not — they could come across the country and shoot me to death and get away with it. That’s what the statistics show, even when parents like Katie’s mom, who weren’t the primary caregivers of their children, claim to be so stressed from the care of us that they have to kill us. It’s horrifying. And people get away with killing disabled people all the time, especially through subtle medical neglect that never gets detected. Or means that are actually totally legal in some countries even when they are against the disabled person’s wishes. There are parents now that are out there campaigning for the right to kill their children with severe developmental disabilities with the help of the medical system, and people sympathize with them, not with us.

The worst thing in some ways for me, about this video? Besides the fact that she said all this in front of a daughter who clearly understood what she was saying? And the fact that it sparked off murders that the video was then used to justify? Is that I’m constantly being told that I’m being unfair to the woman who is in it. By people who claim to be on the side of autistic people. It works like this: she left autism speaks in order to campaign against quackery. There is a large community of largely nonautistic people who fight against autism quackery. Which is a good thing to fight. But they tell me that she is such an important person in the fight against quackery that I need to overlook what she did to autistic people when she wrote this. That it was a long time ago and it shouldn’t matter.

I’m willing to overlook a lot of what people did a long time ago, because people change. People do awful things and then they become better people and don’t do them anymore. I am the last person to say that someone should be shunned forever because of something they did that they truly wouldn’t do anymore. And I’m not trying to encourage people to hate her or harass her or anything.

However. What she did was huge. It had a huge effect because she’s a very public figure doing a very public very bad thing. She has never come to terms with the effect of what she has done. She has never made amends of any kind for what she has done. And if someone does something that huge and that awful, then… They need to dedicate themselves to doing the opposite of this, as much as possible. And she doesn’t. She just gets defensive about it and dedicates herself to anti-quackery. Someone in such a public position doing such an awful thing, needs to use their position of power, and she has great power in the autism community, to undo as much of it as possible. If it were me, if I had said something like that once that had such devastating effect, I would dedicate the rest of my life to preventing the murder of disabled people, to denouncing what I had previously done. She is clearly capable of such acts because she has done this with quackery. But I will not trust her until she does this with murder as well. Because murder of disabled people is such a horrible and real thing and her actions have contributed to murders. It’s been studied. When parents attribute murder of disabled children to parental stress and overwork and stuff, more disabled people die, because people who were right on the edge of killing us get a justification for it and get pushed over that edge. So with her influence comes so much responsibility that she has never taken. And that — not that I am a horrible unforgiving person who can’t possibly understand that human beings make mistakes and that I need to stop saying bad things about people who do so much good for the anti quackery movement — is why I don’t trust her. Still. As long as she continues to defend herself, as long as she doesn’t do anything to undo what she has done, as long as she treats autistic people who complain about this like we are the ones doing something terrible to her… I have no trust. And being against quackery doesn’t make me okay with someone, that’s not my measure of someone’s ethics.

Reblogged this months ago but Tumblr only reblogged it as a link. Rebloggin it in its entirety as a protective measure against link-rot.

Reblogging it myself because I forgot I’d made that post, maybe if I remember, then I won’t have to retype all the same ideas every time I need to tell someone about this.

544 notes

10:34pm May 31, 2014

“I work in an ICU in New York. The scenario described here is the standard practice at my hospital. In fact, the palliative care doctor not only tries to talk patients into dying; she is just one member of an extensive, unofficial tag-team that includes almost every nurse who cares for the ICU patient. These workers file through the patient’s room around the clock, repeating the same, dire litanies of scary predictions in the effort to coax the patient to give up and request a DNR. If the patient is sedated or unconscious for other reasons, the nurses and doctors focus their coercive behavior on the family. It doesn’t matter if the family or the patient requests a DNR–as long as it gets requested, the patient can be moved out of the ICU and allowed to die in a cheaper room. Meanwhile, whichever nurse finally gets the family or patient to “make a decision” brags about it, and is respected by the other ICU nurses as a hero (note: if a patient makes a decision to stay alive and continue being treated, the nurses do not consider this “a decision.” As long as a patient or family keeps deciding to keep the patient alive, the nurses and doctors keep pressing them to “make a decision.”) Meanwhile, the palliative care doctor is cherished and loved by the ICU staff for her ability to sweet-talk almost any family into ordering withdrawal of treatment so the patient “can go to Heaven.” A few weeks after the palliative care doctor began her practice at my hospital, the CEO mentioned her in a memo to all of the staff, thanking her for helping to shorten the average length of time patients were in the ICU and in the hospital. “Length of Stay” is a central measure of a hospital’s potential to make or lose money. The shorter the average patient’s Length of Stay, the better it is for the budget.”

Comment on “Bill’s Story“ on Not Dead Yet (via gotta-block-em-all)

Something to keep in mind if you’re thinking about the “right to die.”

In theory, it sounds very high-minded.  In practice it will not be a free choice. People will be coerced to “freely” die. And as this sort of thing is hard to catch, this sort of coercion will be legal.

(via neurodiversitysci)

I’ve heard of this from other ICU nurses across the country.  It’s absolutely real.  And to some extent this is what I faced when people were busy trying to convince me not to get a feeding tube – they knew I needed one, knew I’d die without one, but just wanted me out of their hospital even if that meant dying.

612 notes

1:16pm April 13, 2013

“

“I was asked ‘if I understood the gravity of my condition.’ Yes, I said, I am well aware of the implications.”

Bill Peace’s story is told in full elsewhere, an essay about the severe wound he had in 2010 and in particular one experience he had late one night, an event that he says has “haunted him”. Here are some excerpts:

The doctor, wrote Peace, “grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.

“This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people.

“The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.

“His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics.

“If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear: I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed.

“I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.

“I never told anyone about what transpired. Not my family, friends, the nurses I saw for over a year when I was bedbound. I did not tell anyone for a very good reason: I was scared. Terrified really. A physician, a person who is highly educated, and I would hope free of any bias, considered my life not worth living. Disability was a fate worse than death. It was the ultimate insult.

“People with a disability do not write about fear, we feel it I am sure, but few delve into how deadly cultural assumptions can be.”

”

Bill Peace

In this case, even antibiotics can be a treatment disabled people are pressured to reject. Notice how, as with most of my doctors, the doctors tried to avoid the word death. They just talked about making him comfortable. This one conversation chills him to the bone. I had multiple conversations like that every day for days in a row about my feeding tube. This stuff happens all the time. Disabled people die from it all the time.

32 notes