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

8:44pm May 11, 2014

patternsmaybe:

death panels are a real thing

they’re called ethics committees 

Yeah I’ve been baffled at the idea that they are new (and tied to any specific healthcare plan) or that they’re mythical.  They’ve been around for ages, overriding the wishes of patients and families and deciding when care is too ‘futile’.

60 notes

4:37am March 11, 2014

➸ the problem with euthanasia

clatterbane:

ineedthatseat:

rubyvroom:

the problem with euthanasia is that we end up working so much harder to end the lives of the sick and disabled than we do to prolong them.

society makes it so difficult and expensive to relieve pain and go out in public and do the activities of daily life…

Some excellent points. I would definitely also like to see more discussion and actual action around trying to help people’s lives feel more worth living.

Including access to good hospice services for people who would benefit from that. Though, that was the only way my mother could get anything resembling adequate pain relief, while having poor access to other treatment options as an uninsured person. We need to discuss that type of pattern too. I also really can’t blame people for wanting to go with the least bad option available to them, which sometimes may well be suicide. But we really need to work on getting more actually good options available to everybody, before pushing that as an option.

I also think it’s very very important to keep drawing strong distinctions between euthanasia and very much wanted assisted suicide in cases of terminal illness. Especially with the understandable concerns that people in positions of power just *won’t*, and will take their shitty ableist attitudes and poor grasp of consent out on people in dangerous ways. Those are very different situations, and I think it’s important to keep stressing that they are worlds apart.Yeah – all of that.  Unfortunately most of the pro-euthanasia organizations have really creepy-ass agendas.  Like, the Hemlock Society (or whatever they’re calling themselves right now) pretends to be all about assisted suicide and choices at the end of your life and stuff, but every time someone like Robert Latimer murders their disabled child, they’re right there supporting the murderer.  And they were founded by some really horrible people who deliberately tried to pressure disabled and terminally ill people into suicide by severe emotional and psychological abuse.  But change their name to End of Life Choices and everyone thinks that’s what they’re about.  Same with Kevorkian, he was a really creepy death-obsessed doctor who wanted to be able to study death, first tried it among death row inmates, encountered opposition, and reinvented himself as a champion of the right to die, so that he could kill people more easily.  The way he finally got into deep trouble was when he killed someone who said “No, wait, stop” or something like that just before he died.  He was never in it as a human rights issue, he was in it because he was a creepy serial killer wanting easy victims.  And a large number of the big names in this movement are people much like himself.  Which is one reason the issues keep getting confused about the differences between these things… people like him don't want there to be a difference because what they want is people dying, not any human-rights-oriented approach at all.  Another big proportion of the movement is people working in industries such as insurance, where they know it would be cheaper to fund death than to fund long-term care or treatment.  

I’d also like to see people stop seeing opposition to euthanasia as a conservative or pro-life agenda.  Because some of the best arguments against legalizing euthanasia have come from disability rights advocates.  But everyone acts like we’re just too stupid or too gullible to understand the issues there.  They act like the pro-lifers are just using us to pit us against liberals, and like nondisabled liberals know what’s best for us.  Often euthanasia is the only disability-related “human rights issue” that liberals care about, and they wonder why we don’t trust them.

I’d also like to see a lot more understanding that disability in and of itself is not grounds for suicide.  And that many times, the reasons people with terminal illness are killing themselves, is not horrible intractable pain that can’t be treated by meds (a situation most people would understand), but rather a fear of becoming disabled.  A fear of needing to be taken care of.  A fear of being a burden.  A fear of being incontinent – that’s what “dignity” is often a code-word for – incontinence.  People are so afraid of needing diapers that they would rather die, and that is not a situation where I think it’s a great idea to just hand them death on a silver platter.

We do a lot of suicide prevention work for nondisabled people.  Some of it I don’t agree with, some of it I do.  But when a disabled or terminally ill person is suicidal, everyone assumes it’s a rational choice that was made to avoid horrible pain that they assume comes along with the condition.  They don’t look into whether that’s actually true or not.  They don’t look into the life situation of the person involved, or whether they are severely depressed or traumatized.  They don’t look into whether anyone is pressuring the person into it.  They just champion our right to die.

And that’s true of some of the most famous euthanasia cases involving disabled people without terminal illnesses.  One of the really big ones was a woman with a severe congenital disability, I think it was cerebral palsy.  She had lived her life and enjoyed her life for over twenty years.  Then she went through a bunch of trauma all at once, including losing her husband.  Then she started petitioning the state for the right to go into a hospital and starve herself to death.

And nobody looked at the fact that she was dealing with so many major life stresses that many nondisabled people would be suicidal at that point.  Nobody looked at that at all.  They just saw a severely physically disabled woman, someone they believed was living a life not worth living, and they believed her that it was her disability that had caused the problem.

Mind you, I do think people should have a right to suicide.  That means everyone.  That doesn’t mean that I think suicide prevention is bad.  But I think suicide in general is a right.  What I don’t believe, is that there’s any right for suicide to be made easier just because you’re disabled.  We already have a right, for instance, to turn off our ventilators and be sedated until we die, if that’s what we want.  We have a right to refuse life-sustaining medical treatment.  We don’t need it to be any easier than it already is.

Note I’m talking there about severely depressed disabled people, not people right at the end of their lives who don’t want to die in agony.  Severely depressed disabled people make up the bulk of widely publicized ‘right to die’ cases, including a surprisingly large proportion of Kevorkian’s victims.  And I don’t believe that severely depressed disabled people have any right, whatsoever, to have suicide made easier for us.  

We should be able to get help with our depression or other emotional issues, whatever form that help might take.  We should not be able to blame our emotional issues on our disability and have the entire world decide that we must be making a rational decision to end our ~unbearable suffering~, because they assume that in our place they would be in unbearable suffering.  Even though the way disabled people describe our lives completely contradicts the idea that disability means unbearable suffering.  Even though an increasing among of research into the foundations of happiness supports what disabled people have been saying all along, which is that regardless of severity of disability we are pretty much as happy or unhappy as anyone else, unless our disability inherently has a component of depression to it.

I’m even nervous about this kind of approach to chronic pain.  I have trigeminal neuralgia and other severely painful conditions.  Before I got treatment, the only thing stopping me from jumping out a fourth-floor window sometimes, was that the pain itself was too incapacitating for me to do it.  I have lived with severe physical pain my entire life, probably as a result of an inherited neuropathy, among other things.  Neuropathic pain is some of the worst pain out there.

And I’m really bothered by the fact that because of my disability, and because of the fact that I was in severe pain, there were times when I could have made more of a case for assisted suicide than many of the disabled people who have tried to publicly end their lives.  And I’m really bothered by the fact that the country would have gobbled it up and gotten right behind me and tried to change law to make it easier and all these other things.  When what I really needed was pain treatment carried out by an experienced team of clinicians who understood the type and severity of pain I was dealing with.  Which is what I eventually got.  Suicide averted.

Because, I wasn’t at the end of my life.  I wasn’t faced with a choice “Should I die in agony, or could I die a little more peacefully?”  I was in my twenties and dealing with severe pain.  And people in their twenties who don’t have terminal diseases and who do have severe pain, should not be the focus of euthanasia efforts.  Even if the pain can cause suicidal thoughts.  Emotional pain can cause suicidal thoughts too, and you don’t see a whole lot of advocates of assisted suicide for people with psychiatric disabilities.  There are some, but it’s not a big thing, because there’s this understanding that suicide at that point is not 'the rational choice’ even if the person is suffering really horribly with no end in sight.  But if a physically disabled person has the same psychiatric problems that can drive people with psychiatric but no physical disabilities to suicide, then suddenly our suicidal thoughts must be ~rational~ and ~well thought out~ and ~understandable~.  And that’s all kinds of messed up.

I do, actually, believe that there need to be ways to deal with situations where a person is clearly dying, is in horrible pain, and wants to die a little faster so they’re not in horrible agony in their last days, weeks, or months.  Including, sometimes, making death available to the person.  But even there, there’s often things going wrong far beyond what most people know about.

In particular, there’s a cycle people can get into with opiates.  Where they have pain, so they take opiates, and they have more pain, so they take more opiates.  Many doctors do not know about this, but there’s a chemical in opiates that, in large enough doses, can cause severe intractable pain.  So when they throw these massive doses of opiates at a dying person, they’re often making the person’s pain worse rather than better.  I’m certain that dynamic is behind at least some situations where people want to take their own lives.  And it’s horrible and tragic that many doctors are unaware of this potential side-effect or how to deal with it.  (How you deal with it, among other things, is to back off on the dose, and sometimes combine a bunch of different meds to get the same effect, rather than massive doses of one particular med.  It doesn’t always work, but it can work, and it can alleviate situations that are completely horrible and that everyone assumes are coming from the disease rather than the treatments.)

And if more doctors knew about that, the number of people who want to kill themselves at the end of their lives, would be lower.  Same with a number of other factors that go into it.  

And I think whenever you’re in a situation where someone is wanting to die, you have to look into every possible factor before you tell them “Yes, I’ll help you die.”  Because death is permanent, and life isn’t.  So it’s better to err on the side of life and work things out before you ever, ever come to the conclusion that death is the way to go.  And I don’t think that most assisted suicide laws actually do that.  They do require some amount of evaluation to see what’s really happening, but they don’t require enough of that, and there aren’t enough safeguards.  A simple physical and psychiatric evaluation is not enough when dealing with a decision of that magnitude.

And that’s what makes me really nervous.  All the assumptions that go into backing people when they make decisions like this.  Usually, people just have this picture in their head of what it means to be disabled, what it means to be dying, and what it means to be in pain.  And if you’re any of these three things, they assume that your choice to die must be a purely rational choice.  Because they imagine themselves in your place, and can’t imagine that you’d have any reason to live.  They also put undue weight on situations like “being a burden on your family” (which really means “your society has failed to support you adequately”, which should never be considered an adequate or rational reason to die), or “having to live an undignified life” (which really means “you are incontinent”, most of the time, which should also not be considered an adequate reason to die – people’s feelings of shame around that issue are not a problem to be solved with death).  

And they don’t evaluate those things.  They don’t think “Is this really a good enough reason?”  They don’t think “Aren’t there other solutions for these things?”  They don’t examine their own prejudices about what life as a disabled or dying person means.  And they become incredibly self-righteous against anyone who says “Hey, wait a minute, is this really the direction our society should be going in response to these issues?”  Their fear of “having to live like that” becomes so powerful that they become horribly angry at the idea of anyone being “forced to live like that” (i.e. not being offered assistance in dying).  I’ve many times had conversations where I didn’t even come out 100% against assisted suicide, I just said “Shouldn’t we be thinking of these other issues involved in this issue?” and gotten my head bit off by people who felt that I was somehow destroying their way to get out of a life they assume would be impossible to handle.  

So people become outraged at this idea that someone would “force them to live like that”.  I never see those same people becoming outraged at the barriers disabled people face in everyday life.  I never see them becoming outraged at the fact that our lives are made unlivable by a society that would rather offer us ways to die than ways to live.  I never see them becoming outraged when we are pressured in big and little ways, every day, to disappear or die.  I never see them looking at disability issues as human and civil rights issues.  They just see disability as a tragedy, they see institutionalization of disabled people as potentially tragic but always inevitable and the only way we can get 'proper care’, and they see the prospect of being shut out of society, living in an institution, and other truly horrible experiences, as identical to the prospect of being disabled.  They can’t separate the two in their minds.  They can’t see that being shut out and locked up are crimes against humanity, not inevitable outgrowths of having a certain kind of body.

And all these issues and more come into play when people say they support euthanasia or assisted suicide.  They see death as an escape from a fate worse than death.  And they see too many fixable problems in disabled people’s lives as a fate worse than death.  And that becomes their entire rationale for supporting euthanasia or assisted suicide.

And that’s why Robert Latimer can murder a 12-year-old girl with cerebral palsy who never asked to die, and be championed as a euthanasia proponent instead of a murderer.  It’s why Kevorkian could kill a long series of people who were many times not terminally ill, and not be considered a creepy serial killer.  It’s why people do, constantly, confuse murder, euthanasia, and assisted suicide.  Including most of the biggest proponents of these things.

So… I’m not actually 100% against assistance in dying in all cases.  But I do think it’s overused and over promoted.  I don’t think it's safe to disabled people to make it legal.  I don’t even think it’s safe to terminally ill people to make it legal.  I don’t think we have the kind of society or the kind of safeguards that would make it possible to do this, at this point in time, without disastrous consequences.

And I hate this – I absolutely hate it – but this is one of those situations where I really have to weigh two things against each other.  One is the prospect of disabled and terminally ill people dying, who ought not to die.  The other is the prospect of terminally ill people suffering horribly while they die.  And the first one is worse.  And that’s what my position on legalization comes down to.  Not a desire to see people suffer, but a knowledge that needless deaths are worse than needless suffering.  I hate to have to weigh two awful things and say “Which one is worse?”  But that’s how I come to my conclusions about this.  In a better society, things would be different.  But we aren’t in a better society.

But unfortunately, the confusion between euthanasia (including “involuntary euthanasia” a.k.a. murder) and assisted suicide, isn’t just something that random people in society have confused, it’s something that proponents of both are deliberately confusing in an effort to make people sympathetic to all of it at once.  They put out the image of a terminally ill person suffering horribly as they die, while pushing for parents to be able to murder their disabled children without any legal consequences, or for disabled people to have a right to medical support to die whenever we become suicidal for any reason.  And that’s going all the way up to the highest ranks of the prominent right-to-die organizations.  So this confusion isn’t just random, it's encouraged by some of the creepiest people I’ve ever had the misfortune to encounter.  And somehow our society turns around and calls those people heroes or human rights advocates, when if they were advocating killing anyone else they’d be considered murderers.  And a lot of that confusion is not only down to their misdirection, but down to a lot of fears of disability that they’re exploiting to their own ends.

Also a lot of people aren’t aware of the rights they already have.  Like disabled people who are on respirators already have the right to have their respirators turned off.  I went through the process of setting up my living will, and was surprised at all the treatments I already had the legal right to refuse – feeding tubes, respirators, treatment for infection, resuscitation, etc.  There’s a lot of people who’ve been frightened into believing that we already don’t have any of those rights, and that somehow they’ll be forced into accepting treatment for diseases they’d rather die from.  For people in that situation, I’d strongly suggest getting a living will drawn up.  Because it’s mostly when you don’t have a living will, that you’ll have anything forced on you.  But I’d also strongly suggest you do your research before you fill one out.  Because if you fill out a living will, and later become legally incompetent, you may not be able to change your mind, even if you later decide you want to live.  So if you have a stroke and need a feeding tube and have enough cognitive dysfunction or communication impairment that people aren’t sure what you know and what you don’t know, you could end up starving to death even if you make it very clear you want to eat.  That’s the flip side and you need to be prepared for it.  Do your research, find out how happy and unhappy people actually are with a variety of medical conditions, talk to people who are on respirators and feeding tubes and all the other treatments you assume you wouldn’t want.  And do all that before you make any long-term decisions about whether you’d want to live in a certain situation.  Because it’s a very common thing, for disabled people to think they’d draw the “I don’t want to live anymore” line at a certain loss of physical or mental function, only to discover, when they reach that line, that their desire to live is unchanged.  But if you’re absolutely certain, then in many countries you already have the right to refuse treatment in advance, you just have to have the right legal paperwork drawn up.

I’ve personally found it much harder to decide to live, than to decide to die, in terms of resistance I’ve gotten from the medical establishment, and I’m not alone among disabled people encountering that resistance.  When I needed a feeding tube, a lot of doctors tried their hardest to talk me out of it.  Some of them even acknowledged I would die without one, but told me that life with one was so hard that “the alternative” (their euphemism for death by repeated lung infection and possibly starvation as well) was something I should seriously consider.  They told me I wouldn’t be able to take care of myself.  They knew that they couldn’t legally just refuse to give me one when it was clearly medically necessary, so they pretty much launched into the task of trying to talk me into getting one.

I also have encountered subtle and not-so-subtle resistance to my living will.  My living will says that I want everything done for me in the event of a heath crisis, no matter how severely impaired I end up becoming.  Doctors and nurses tend to assume, when someone comes to them and says they want “everything done”, that this person is not aware of what “everything” means.  They assume that I’m not aware that resuscitation rarely works, that attempts at resuscitation can be horribly painful.  They assume I’m not aware of what goes on with the treatment of the most severely impaired ICU patients.  They assume that I’m afraid to die, when I’m actually one of the people I know who is the least afraid of death.  They basically assume that if I’d seen what they’d seen, and known what they’d known, then I’d do the “rational” thing and decide to die.  They assume I’m either ignorant, irrationally terrified of death, or just plain stupid.  I see it when they roll their eyes when I tell them what’s in my living will.  When they make it plain with every word and gesture, “Alright, but you have no idea what you’re in for if things go bad.”

And I’m far from alone.  Lots and lots of disabled people encounter this kind of resistance when we indicate our desire to live.  People with ALS get told they’re selfish for wanting to get a trach and go on a respirator.  People who need feeding tubes get talked out of them.  Many nurses and doctors have admitted to having all kinds of ways that they attempt to persuade and manipulate patients and families to sign DNRs and DNIs and advance directives that would allow them to die in various circumstances.  In many ways, it’s much harder to persuade the medical establishment to let you live than to let you die.  The point where it becomes hardest to persuade people to let you die, is when you don’t have any advance directives drawn up.

That isn’t to say that there aren’t situations where people are suffering horribly and can’t get the medical establishment to do anything to let them die faster, even with an advance directive.  It’s just to say, that the situation isn’t nearly as bad, in countries that already have DNRs and DNIs and other advance directive options, as people imagine.  People imagine that doctors are always obligated to do “everything” for you, but in reality that obligation mostly exists when you don’t have any living will drawn up.  If you do have a living will drawn up, many medical professionals are all too willing to follow it even if you change your mind.  And many will heap scorn and derision on you if your living will says you want to live, even though supposedly the living will is supposed to reflect your choices, not theirs.  They assume that anyone knowledgeable about the real statistics, and the real situation for people with the most severe health problems, would choose as they themselves would choose.

And this is one reason that, as things stand right now, I can’t support laws to make assisted suicide or euthanasia (whether the laws confuse the two or not) legal.  It’s not that I don’t understand the cost in human suffering to having it illegal.  It’s that I know it’s already very hard for disabled, sick, and dying people to get the support we need to live as long as we want to live.  And that the medical establishment already does its all to talk many patients and families out of accepting treatment in life-threatening situations.  Talk to any parent of a disabled child with severe health issues and you’ll get at least one story of doctors who refused to treat them, assuming that their life is nothing but unmitigated suffering, and the fights that they’ve had to go through to get things as basic as antibiotics for pneumonia.  I can’t sign on to any law that makes it harder for people who want to live, to continue living.

And I know, I know well, that people say that there are safeguards, that it’s always the person’s choice, that it’s only for people truly at the end of their lives, and that rigorous screening must be conducted.  But right now, there are no safeguards good enough.  Right now, few people question the role of financial issues in people’s decisions to end their own lives.  Few people question whether a person has been talked into it by family members who have persuaded them that they are a burden.  By family members who simply don’t want the trouble of caring for a sick relative, by family members who may even just want an inheritance.  There is no safeguard good enough to guard against things like elder abuse.  A person may say “I want to end my suffering” when a lot of their suffering is due not as much to the pain of their illness, as to emotional abuse by family members who are sick of having them around.  Psychiatrists don’t have magic powers to discern such things, no matter how much counseling a person has.  And medical professionals in general have a habit of assuming that such decisions are made for good reasons, no matter what the reasons actually are, because of their own biases about living with disability and disease.  For that matter, we aren’t even that good at deciding how long a person really has to live – there are people given years to live who drop dead the next day, and there are people given months to live who live for years.

And I hate having to make this choice.  I hate pitting these two situations against each other, because both of them are terrible situations.  But when I look at the cost to humanity of people dying who don’t want to die, versus people living who don’t want to live, there’s no question which one is worse.  Right now we live in a society that is biased towards death in these instances, and that cannot, no matter how much some people want it to, safeguard against people dying who shouldn’t be dying.  And until we have that society, I can’t support these laws.

Which actually makes me angry.  Because there are circumstances where I would rather die than live.  But I’m not able to make that choice.  Because I know that if I had the slightest loophole in my advance directives, anything where I’d say I would rather die than live in any circumstance, that would be warped and used against me.  So the society we live in right now prevents me from making such choices as freely as I might want.  Because I’ve already faced situations where people were wearing me down and trying to get me to give up fighting for my life.  The more legal and possible it is for people to die in these circumstances, the more people will die who didn’t really want to.

Most people have a fairly uncomplicated way of viewing these things.  They either see assisted suicide (and often, euthanasia and outright murder) as alleviating suffering, and see anyone who is opposed to it as promoting suffering.  Or they have some kind of abstracted moral idea that all killing is wrong and ignore the situations where people are suffering and won’t be harmed by death at that point.  It’s this society that sees everything as having two sides and only two sides, pick a team and stick with it, as if these decisions were just a football game or something, that promotes such uncomplicated views of these things.

But there are also a lot of us who, whatever side we ultimately come down on as far as the legal situation goes, acknowledge that there’s a lot of complexity about these situations.  That it’s not as simple as people who “want people dead” or people who “want people to suffer needlessly for an abstract principle” (although there’s plenty of both of those going around).  And our views tend to never be acknowledged or discussed.  And also, the points of view of disability rights activists who oppose euthanasia and assisted suicide are pretty much unheard anywhere in these debates.  Even though our viewpoints are some of the most compelling I’ve heard in terms of real-world understanding of the dangers and pitfalls of such laws.  Most people assume that we have religious motivation, and some of us do, but for most of us that isn’t the deciding factor.  Disabled people who oppose making these things legal are pretty diverse in our reasons why, but I’ve rarely heard one of us whose opinions aren’t worth seriously taking on board whether you agree with us in the end or not.  

Because, basically… even if you want assisted suicide or euthanasia to be legal.  If you care about disabled people at all, you have to find answers to our concerns.  And those answers cannot be as simple as a doctor or psychiatrist (who have their own biases), signing off that someone is making a rational choice, or restricting assisted suicide to people with a certain amount of time given to their lives by doctors.  Those things may sometimes do some good, but they don’t do enough good.  Many disabled people suspect that no safeguard will ever be good enough.  But if you do seriously want to create safeguards, then you have to take on board every single concern that disabled people bring up and find multiple levels of answers to each concern to make things safer for us.  And I don’t mean “answers” that are only answers in the same way that “security theater” is an answer to the threat of terrorism.  I mean real, concrete answers that make a change in the world.  And people have to stop dismissing our concerns as 'paranoia’, because all of our concerns are based on real things that have happened to us or our loved ones.  Very few of them are based on abstract possibilities that have never actually happened.  And many of us have a better grasp of some of the pitfalls of the right-to-die movement, than do people who go into that movement idealistically assuming that everyone is there to prevent suffering, that there are no would-be murderers and serial killers lurking in the ranks, even in very high positions in the movement.

121 notes

12:04pm December 28, 2013

➸ Disabled Patients Say Doctors Are Denying Them Organ Transplants

kristinakringle:

queerability:

ive-month old Maverick Higgs was born with a severe heart defect, and two surgeries later was still in heart failure. He needed a heart transplant, and fast. But after initially saying he was a candidate, the child’s New York-Presbyterian doctors decided there was nothing more they could do to help. They said Maverick had six months to live.

The official reason given for denying Maverick the transplant was because he suffered from Coffin-Siris, a rare genetic defect that the doctors said would put him at risk for infection and tumors. They provided Maverick’s parents with a study on the defect.

But when Maverick’s mother, Autumn, contacted the study’s author, she discovered that there was no evidence to support the theory that children with Coffin-Siris had compromised immune systems.

She was confused, but excited. But when she told the doctors, they still refused to go forward with a transplant to save Maverick’s life.

And Maverick’s mother figured out the most likely reason why was because the genetic defect did have some documented effects — namely developmental disabilities.

This weekend, CNN published a great, in-depth look at organ transplants and the vague, shrouded methods that doctors use to decide who gets a transplant and who doesn’t. In the past, physicians were straightforward about denying transplants to disabled patients — “We do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantations,” one doctor explained, denying a child a transplant in 1995.

But now, in an effort to avoid public outrage, some doctors manufacture other excuses.

Maverick’s parents applied to four different hospitals, three of which turned her down, citing the Coffin-Siris defect or, in one case, “the big picture.”

But CNN talked to six different Coffin-Siris experts, all of whom confirmed that the defect was not a valid reason to deny a transplant.

“I’ve never seen a child with Coffin-Siris who was immune compromised,” said Dr. John Carey, a pediatrician and geneticist at the University of Utah School of Medicine who has been studying the genetic syndrome for 36 years. “I don’t think it’s a valid reason to deny a transplant.”

“(Coffin-Siris) is not a reason to say no to a transplant,” said Dr. Grange Coffin, who first identified the syndrome in 1970, along with his colleague at the University of California, Dr. Evelyn Siris. “I would say it’s wrong to do so.”

“We absolutely know this happens. It’s a huge problem,” David Magnus, the director of the Center for Biomedical Ethics at Stanford University told CNN. “It’s real people sitting in a room making these tough decisions, and it’s not surprising their own prejudices and biases influence them.”

Magnus said he conducted a study that showed despite making no medical difference, more than four in ten doctors considered neurodevelopmental delays in transplant decisions.

And while the ratio of available organs to in-need patients makes it inevitable that some patients will die waiting, CNN has documented a trend of developmentally-challenged patients who were given multiple excuses for why they couldn’t qualify.

Maverick finally got lucky — after being turned down by New York-Presbyterian, Children’s Hospital of Philadelphia, and the Cleveland Clinic — Boston Children’s Hospital agreed to take him on and consider him for a transplant.

Within three weeks, the doctors had adjusted his medication enough that his blood pressure went down, his blood-oxygen levels rose, he had more energy, he gained weight. The baby that once had six months to live didn’t need a transplant anymore and was almost ready to go home.

But should Maverick ever need a transplant, the Boston doctors told his parents, they wouldn’t let the Coffin-Siris affect their decision. He would be a candidate.

(title is a link)

They’re killing us.
They’re literally killing us.
Somebody please notice.

2,212 notes

10:46pm May 14, 2013

Don’t think that we don’t think.

That’s the words on a poster I keep in my home.

I can’t stand the way people use presumed cognitive ability as a measure of who gets to live and who gets to die. Or who ought to live and who ought to die. Or who ought to have any choice about whether they live of die. I can’t stand it at all.

I came face to face with it in the hospital when those doctors were pressuring me to die. They see a cognitive impairment and they see someone whose life must not be worth it.

And I can’t stand how they see me. How they see other people.

They see our lives as nothing but limitation.

I just read a book in which the author describes trying to persuade people to let their relative die. They have a window of opportunity, he says. Because he will be a quad, and he will never be independent again. And he will have a feeding tube and a trach. And that’s the end of his life. So if they just ended his life before he wakes up in the ICU, then he won’t have to live out that life of limitation and suffering. He puts pressure on the family of the man, unconscious, with a spinal cord injury.

Supposedly, The man will always live in a nursing home. Because nursing homes are supposedly caused by us being disabled, rather than because of policies towards disabled people that say we belong in cages, cages full of people like us, cages full of people who oppress us and make us miserable daily, cages where we presumably have nothing to live for, because who would want to live in a cage?

Never mind that people built the cages, and people can unbuild them. Never mind that putting disabled people in cages is a practice that isn’t just the natural outcome of being disabled. Never mind that it’s a human rights violation of monumental proportions, happening in your backyard, around the world, and you do nothing, and you question nothing.

My neighbor got MS. A severe, fast acting kind. One day she could walk and talk, the next she couldn’t walk and had trouble talking. One day she was a person and a mother, the next day she was an unperson. One day she had a life, the next day she didn’t. One day she lived next door to us, the next day she lived in a nursing home. She’s lived in a nursing home ever since I was a little kid. Last I heard, she wanted to die. Everyone thinks that everything I just said was totally natural and the only possible progression her life could take.

I can’t stand it. I can’t stand it. I can’t stand it. I can’t stand it so badly that I can barely stand to talk about it. Barely stand to stand up to the people who defend these atrocities and think they’re right and normal and good and proper.

I read a book by an author I love, an author whose books often suggest that objects and microbes are alive. It contained a speech by a character, that seemed to be considered okay. Not just that character’s opinion, but something condoned by the author. In fact, the entire basis of the horror of the book was based in the horror that character described. The concept of people who were human in shape but had no minds.

The character described in her medical training, going to an institution for developmentally disabled kids. This is in a future that’s supposed to be nearly utopian, and they’re still putting DD kids in institutions. So she went to this place, and saw kids that she saw as having no minds, doing things that only people with no minds would do. Sitting and staring. Or rocking and doing other incomprehensible movements that only people with no minds could do. The character broke down in a way she’d never broke down in her life. She was horrified. She cried. She couldn’t function. Because the entire idea of these kids with no minds was unbearable. It was traumatic to her, to be around these kids with no minds.

Triggered doesn’t begin to describe my reaction to that scene. I nearly wrote the author on the spot.

Only what would I say that could make any difference?

No matter what I said, the fact that I could say anything to her would mark me out as different than those children with no minds that her character saw.

Except I am not different, in some important ways.

Because there’s no such thing as kids with no minds. And using the idea, which is so common, as a basis for the entire reason the book was supposed to be scary. Because it was about a creature that ate minds but left people intact. Is so completely horrible. Can’t even describe how horrible.

And my experiences. I’ve had people look into my eyes and say they are empty, that there is nobody there. I’ve had people look at me and jerk away in horror at the idea that there’s nobody there. I’ve had people say in front of me that I had the cognitive functioning of an infant. All because I sometimes look and act and move in ways people associate with mindlessness.

The entire idea of mindlessness has to die. It has to.

Even people with less brain function than usual, have cell function. And cells think. And cells react to each other and act in concert with each other and do other things that show they have minds of their own, even if they’re not brain minds. And that’s true of everyone. We are all made up of little things that think and react, and not just in our brains.

But the kids in the book didn’t even have minimal brain function. They were just developmentally disabled. Many of them probably had severe movement disorders associated with autism or cerebral palsy or intellectual disability. Many of them were probably thinking in a lot of detail with a lot of complexity.

It is so strange to be considering advanced concepts in disability theory while a pair of cops are staring at you asking if you’re even alive, and if you’re alive, if anyone is home inside you. And being unable to do a damn thing about any of it. It’s so strange it would have made me laugh if I could laugh. Or cry if I could cry. I don’t know which. To be thinking more intellectual thoughts, in a way, than they are and be told you don’t exist. I have been in that situation more times than I want to count.

There’s two big problems.

One is the idea that certain people don’t think just because they are or appear to be severely cognitively disabled.

The other is the idea that the amount of standard type thinking you do determines how good you are, how real you are, how worthy of living you are.

Each of those ideas on its own is toxic. Combined, they are deadly.

But people don’t even need to suggest our minds aren’t there, to think we aren’t worth living. That helps. Because people use cognition to determine how real a person is to them. And only certain types of cognition. And only presumed cognition at that. But you don’t even need that.

Because this is a world where ICU nurses can suggest someone should die, because he will wake up a quad and his life as he knows it will be over. He will never be independent again. We have this wonderful window of opportunity in which we can kill him without being punished for it. Think about it. It’s what he would have wanted.

Please excuse me while I go vomit until there’s nothing left in my stomach. Actually never mind, there’s nothing in my stomach in the first place. And I can drain the stomach fluids out through the feeding tube that makes me an unperson in the eyes of the medical establishment.

Because once you have a feeding tube, your life is over.

So many lines they decide.

When you can’t walk. When you can’t talk. When you can’t eat. When you can’t breathe. When you can’t dress yourself. When you can’t feed yourself. They decide all of these is a line where you go from human to nonhuman, person to unperson, life worthy of life to life unworthy of life.

And then there are a lot of lines that are cognitive, too. They talk about persistent vegetative states. They actually use the word vegetative as part of the diagnosis. And they think there’s no prejudice there. They think a person in such a state can’t interact with the world, because they think that all thinking that is important, is carried out in certain parts of the brain, and they think those parts of the brain aren’t functioning.

Except then they look on brain scans and find that a lot of such people have something more akin to locked in syndrome, rather than an inability to think.

But then they decide that their life isn’t worth living in another different way. They decide that people in such a state would never want to be alive. They decide that because they assume that living is about being able to move and talk and do things.

And that’s not what living is about at all. Living is about life. And life usually wants to continue. And many of the supposedly unbearable circumstances of disabled people’s lives are not inevitable. They’re caused by how people react to us. What people do to us. And they do all these horrible things to us and then say those horrible things are a natural part of being who we are. When it’s them doing them to us. It’s awful. And they can’t see their own deadly biases.

So if you have a diagnosis of PVS, you’re screwed. Because either your life isn’t worth living because you as they know you isn’t actually there. Or else your life isn’t worth living because you are there and your life must be unbearable. Either way, they find it easy to kill those of us who reach that state. They even say it’s not a disability, therefore what they’re doing isn’t ableism.

People have all these ideas that they get out of nowhere and they call them real because doctors pull them out of their asses. Another such idea is the idea of a coma.

Supposedly, people in comas aren’t conscious at all. And some people in comas aren’t conscious. But other people in comas are conscious. The entire idea of what a coma is, is based on whether the person outwardly responds to stimuli. That’s how they measure it. Contrary to popular belief, coma is not a measure of how conscious you are.

I know people who have been conscious during comas. They remember things that happened. They heard everything going on around them. Many times, they even remember hearing people talking about killing them.

Then there’s “When I Woke Up” by Rus Cooper-Dowda:

http://www.raggededgemagazine.com/extra/wokeup.html

Here’s an excerpt:

“In February of 1985, I woke up in a hospital bed in Boston, MA. I couldn’t see very well and I couldn’t move much — but boy could I ever hear!

I heard a terrifying discussion then that I will never, ever forget.

Around the end of my bed were a “school” of doctors in their white coats, planning when to disconnect my ventilator and feeding tube. I immediately started screaming, “I’m here!!” No one but me heard me.

They did notice my sudden agitation. They heavily sedated me. For a time, everytime I woke up I would make as much noise and move as a much as I could to show them I was “in there.”

And they would, in response, heavily sedate me…

I then started spelling the same word in the air, “Don’t! Don’t! Don’t!….”

The doctors decided that the letters I was spelling in the air were repetitive seizure activity and just happened to occur most often when they were in my room discussing killing me…I even took to writing them backwards to make it easy for them to read…

And their response was to sedate me even more….

But, the nursing staff began to believe I was really and truly with them.

One, in particular, starting bringing in a clip board and a broken pen when she talked to me. She would put ink on my fingers, the clip board under my right hand and then ask me yes and no questions in the beginning.

With her I secretly progressed to answering in sentence fragments. However, by doctor’s orders she was not allowed to document in my file what she was doing and that I was giving meaningful responses.

But…she did save my inky answer sheets and recorded the questions she asked. She got into a lot of trouble for that.

Yet, it earned me a final conference where the doctors had to prove to the nursing staff for political reasons that all my communication was just agitation and seizures.

At that meeting, my then husband, who was a doctor siding with the other doctors who wanted to let me die, held that clipboard which was my lifeline up in the air in front of me. He was not going to make it easy.

The purpose was to prove that the nurses were basically hallucinating and that I was really and truly brain-dead.

To prove I could not communicate, he then put ink on my fingers and asked while laughing, “There isn’t anything you want to tell us, is there?”

In response I spelled out, “D-I-V-O-R-C-E Y-O-U!” The laughter got very nervous then. The doctors called for medication because I was obviously having a seizure.”

So she woke up unable to see or talk, with great difficulty moving, and everyone assumed she wasn’t there. I thought of her when I read in that book about ICU patients who periodically went into frenzies of movement that were explained as happening because they didn’t really understand their situation. And were sedated into unconsciousness every time it happened. And this was standard operating procedure. It couldn’t be that they were trying to indicate that they were in there and had a mind and understood all too well what was happening.

I’ve been severely delirious. Delirium is on a continuum with coma. And it’s a weird state. Most people assume it’s a state where you’re not really conscious of your surroundings, and you may do things but you don’t really understand what you’re doing. In reality, it’s a lot more nuanced than that.

One of the key features of delirium is actually the way you fade in and out, from more severe to less severe. You may be unconscious for part of the time you are delirious, but conscious in others. And when you are conscious, your consciousness may be highly altered in ways that make hallucinogens look like a walk in the part. You may hallucinate. You think differently. In the least severe forms of delirium, you are fairly aware of things, but you may be a little disoriented and have some cognitive problems.

I’ve had pretty close to every severity of delirium, including some that resembled coma a little too close for comfort. And I’ve had both excited delirium and quiet delirium. Excited delirium is where you thrash around and try to pull out your catheter and do other really active things. Quiet delirium is when you just lay there and slip in and out of consciousness. Most attention gets paid to excited delirium, but it’s quiet delirium that is more severe and linked to worse healthcare outcomes including death. I’ve done my homework. Quiet delirium is under diagnosed because hospitals like their patients to just lie there quietly, so we do not attract attention the way excited delirium does, and may not pay much attention to whether the patient is actually aware of their surroundings or not. One time this past hospitalization when I was sliding into a mild quiet delirium and my DPA was alarmed by it and trying to get me to come out of it (it’s possible to affect delirium severity by orienting people to their surroundings, and it improves healthcare outcomes to do so). A nurse actually told her, “I know delirium. That’s not delirium, she’s asleep.” I was moving my hand and had my eyes wide open. She didn’t even notice. That is how quiet delirium gets overlooked.

I can’t describe what severe delirium is like. The parts you are conscious for. It’s not the hallucinations that make it weird. It’s the way your mind seems to be fractured into pieces in a way that doesn’t happen outside delirium. It isn’t like being asleep, being awake, or being on drugs (except maybe deliriants, hence the name). It’s kind of a half awareness. Large parts of your mind aren’t functioning, and the parts that are functioning, are functioning in strange ways. It’s not even like an autistic shutdown, even the kinds where you don’t feel like you have any thoughts or awareness of your surroundings. It’s just different. Different from everything else you could know.

But you’re still there. You’re still a person. You’re still real. You can still suffer and you can still experience joy. I’ve experienced beautiful things while delirious and also terrible things. Usually if I’m delirious I’m in severe pain, like a nine. I don’t know where the pain comes from. But it’s there, always, and it makes things miserable. Maybe your brain generates pain when your higher order functions go wonky.

I’ve also experienced a lot of strange partially odd cognitive states during autistic shutdown, but it’s different from delirium. I’ve had thoughts disappear and the world disappear until all I can remember of those periods is that time must have passed because I remember something. But I couldn’t tell you what I remember. I often lose the ability to understand language, or to use conceptual thought. The world becomes sensory and motor rather than intellectual. Sometimes I lose all ability to move volitionally. That’s usually when people start saying there’s nobody there. But the ironic thing is, that when they think I am not there is when I am the most capable of intellectual thoughts. Because being unable to move frees my brain up for thinking. If you want to see me at a time when I can’t do intellectual thoughts very well, it’s far more likely to be a time when I’m moving but immersed in the sensory side of the world. At none of these times do I stop being a person who ought to have the same right to be alive as any other person.

Some autistic people, like me, live in a constant state of flux between all these different states. Other autistic people’s brains make a sort of bargain. Where they get to keep abilities more permanently, but at the expense of other abilities. I frequently meet autistic people with far more intellectual skills than I have, who find it difficult to move voluntarily, at all, ever, and can only type with the greatest of difficulty. That’s because their brains have sacrificed movement skills for intellectual skills. That’s a very common pattern, yet they are often the autistic people believed by others to have the fewest intellectual skills of any of us. That again shows that people equate intellect with movement.

Often I have to do something similar but more temporary. I write a lot of my writing when I’m unable to move. And I’m unable to write easily when I can move. So I do a lot of my writing frozen. Or in the past, letting my body run around the house on autopilot with no conscious control. It doesn’t do that much anymore because of neuromuscular problems. But either way. My brain sets up all the ideas and concepts at the times when I look the least intellectually capable. And then, at the times when I’m able to type, I wait for an opportunity for all those stored words and concepts to come tumbling out my fingers, but am often unable, at the time, to do any complex thinking. Because I’m using all my cognitive abilities on certain aspects of movement and perception.

A lot of what autism is, is trade offs between one ability and another, because of a brain flooded with information and incapable of handling all of it a once. So we handle a tiny bit and make trade offs between one skill and another. Some of us make permanent trade offs, some of us are constantly switching, and some of us go in between somewhere. Some of us also go from one set of long term tradeoffs to a different set — depending on what set is which and which skills people value, this will get seen as either progress or regression, regardless of what is actually happening. My brain once made some ultimately wonderful changes in my life, setting firm limits about what tradeoffs it was willing to accept. But because speech was one of the skills on the chopping block, other people choose to call it a regression. Because speech is that important to them, even though to me it’s a peripheral skill I barely notice in the scheme of things other than for its capacity to cause pain and wreak havoc on my other abilities.

Dementia is another condition that people love to use for the way people see you as nobody there. If I survive to old age I have a pretty high risk of dementia, because of the amount of time I’ve bashed my head into things. So I think about it a lot. The prospect of dementia itself doesn’t scare me that much. In fact, to me it would signal that I survived long enough to get it, which would amaze me if it happened given some of my other health problems. But what scares me is how other people would react to dementia.

I’ve spent a lot of time around people with various kinds of dementia. I can tell they have a lot of cognitive problems. But I can also often see that they understand more than people give them credit for. As my particular sort of autistic person, whatever that is, I’m very attuned to subtle movements that indicate reactions to one’s environment. And I see those movements all the time in people with dementia. Movements that show they are processing information about their environments. Movements that show they are thinking. Sometimes I can see the gears turning in their heads as they think about things and try to come up with responses.

But there’s that ridiculous thing about speech and movement again. Other people are not attuned to those little movements that give off information about what you’re seeing and thinking. They’re only attuned to things like whether the person can talk, and how fast they react. And how fast they can talk. Many times I’ve seen people with dementia left behind in conversations. They want to say things. They are trying to say things. But the thoughts are moving to words too slowly. By the time they come up with the words, everyone has moved on, and their out of place words aren’t even seen as having to do with the prior conversation. They’re used to prove the person is disoriented even if they’re not. I was not surprised when they did studies and found people with dementia who can’t talk at all have their cognitive abilities underestimated constantly. Because people use speech and a limited set of movements as proof of whether someone is thinking or not.

It’s funny how doctors and nurses usually seem to overestimate their ability to detect consciousness, and lack of it, in their patients. Just as their ability to detect our quality of life is severely limited, so is their ability to detect consciousness.

If you want real information about how hard it is to decide whether someone’s conscious or not, talk to a good anesthesiologist. It’s their job to mess with consciousness so that people won’t suffer during surgeries and invasive procedures. They’re very good at it. But even the best ones can’t guarantee that someone won’t be conscious. In fact the best ones will tell you they can’t ever guarantee what gou will and will not feel. Consciousness is a slippery thing. We can’t even define it, much less measure it, much less use it to determine who is really human and who isn’t.

Yet to many people, consciousness is something they think they can see. And they think that so intensely, that they refuse to consider how unaware they really are. I have had people decide that I had no awareness or understanding of the world based on nothing but photographs. I have also had people decide that I had awareness and understanding of the world and tons of abilities I might not have had at that moment, also based on photographs. I’ve had to prove that I can write, that I can understand things, that I am a real person, over and over again, based on people’s faulty understandings of me. And yet, there’s still the ones who say “She has the cognitive functioning of an infant,” in front of me. And others who say I’m not delirious when I’m barely aware of my surroundings at all. It goes both ways because people overestimate their ability to judge what consciousness is and who has it. Something even philosophers and anesthesiologists, who make their work in that area, can’t agree on.

One reason I can’t stand the (extremely white middle class male able bodied etc.) skeptic community, is because they make these judgements about disabled people all the time. They say it’s impossible that people judged to have a profound intellectual disability could possibly communicate, entirely based on their judgement of what a profound intellectual disability means, and how you measure it, and what such a person could do. They don’t even think about their biases when it comes to disability of any kind pretty much ever, and they push my buttons a lot. They are sure confident about consciousness in a way nobody who studies it actually is. And they always judge in the direction of people lacking consciousness.

The other odd thing about consciousness is that not all thinking is conscious. I’m not talking about a Freudian idea of what is subconscious. I am talking about how the brain works. A lot of thinking and learning takes place in more parts of the brain than people know. And a lot of thinking and learning takes place on levels that we aren’t aware of. So it’s possible to have someone where the ability to be aware of things in the way we call cosnciousness, is impaired or absent, yet they are still doing things and responding to their surroundings.

I experienced that in delirium once. I slid from not conscious, to sort of conscious. And I felt this weird sensation but couldn’t place it or even consider placing it. I woke up all the way and my arm was trying to pull out my Foley catheter. I was horrified.

But in my view, the person I was when I was pulling on the catheter, before I woke up, that was still me. That was still a person. Just as I was still me before I woke up… I have no idea what happened previously. But I woke up to a group of men trying to pry my arms and legs off the rail of my hospital bed. I had a death grip on the rail and was having none of it. I still don’t know what happened to get me to that state. But I don’t think I’d have been any less real, any less me, if I’d stayed less conscious. And people forget that, they think their conscious thoughts are all they are. But thoughts are built on a huge foundation of thinking and learning that is purely instinctive and either not conscious of less conscious.

But consciousness is such a strange thing. I think part of me was still conscious during those times, just not the kind of conscious where I can remember. I think every part of my body has its own sort of consciousness. And not in some sort of fluffy metaphysical way. But rather that cells think and groups of cells work together and other things like that. So it’s not all in the brain and it’s not all in one part of the brain. I came up with this on my own, but I found out it’s considered one valid philosophical theory. I’m not big on theories though, or long names with ism at the end. It’s just now I experience things. I am more than my forebrain and more than my brain and the part of me that thinks with my brain is not the only part of me that wants to be alive, strives to be alive, in its own way.

A lot of medical professionals find all these ideas grotesque. They find the entire idea of disability grotesque, and cognitive disability perhaps the most grotesque of all. When I say cognitive disability, I mean all cognitive disabilities not a substitute for intellectual disability. It also means autism, learning disabilities (both UK and USA), dementia, delirium, brain injury, etc. Anything affecting thought.

I think it might especially bother doctors, who often prize their intellectual skills, that there exist people who have trouble in all those areas and are still alive.

But it’s not just cognitive disabilities. To many of them, all out lives are grotesque. Not just the most extreme cases but most of us at all. Many people even think that it’s bad that medical science has advanced enough to keep lots of people alive who would have died in the past. Even though that includes themselves as often as not, they don’t think about that. They only think it about those of us who are disabled in some way. Especially those of us who are “kept alive” by some “artificial” means: Tube feeding, respirators, dialysis. People think machines are grotesque, that we are grotesque, that science has gone too far and invaded us and made us something less than human.

Disabled people are usually grateful to be alive. We vary on our opinions of various machines, but we generally are glad to have the chance to exist regardless of our other capabilities. But every step of the way we are pressured to accept death instead. Told we are selfish. That we are disgusting. People tell us. They tell our families. Our lives will never be the same. We should die. We should die. We should die.

They repeat it like that. And what people hear over and over, we often come to believe. It can be hard to resist such pressure. Especially if we are already sick or disoriented.

This is in a world where, in most cases, it’s not legal to just up and kill us in most circumstances. Yet it happens all the time, by pressuring us not to accept medical treatment necessary to save our lives. We are pressured to be DNR, or DNI. We are pressured to refuse or withdraw treatment. And it’s no accident that the slick ads for euthanasia everywhere in my state are paid for by insurance companies.

There is a doctor who thinks he’s doing the world a favor. He makes videos of people with severe dementia and shows them to people with mild dementia and their families. He uses those videos to pressure them into signing DNR orders. By scaring them into believing they will turn into empty husks with no person inside. Because that’s what our society believes when they see the movement patterns of a person with severe dementia. He also does videos of people with feeding tubes to try to get people not to accept feeding tubes. And I think he also does videos of people doing codes, to get people to sign DNR orders. He’s trying to get people to avoid treatment. He believes he is doing the world a favor. Really does. It’s chilling. Better dead than severe cognitive disability. He thinks that just because he doesn’t narrate his videos, that they’re impartial, that he’s not pressuring people into a decision. He’s wrong. You can narrate a video without saying a damn word.

When I get my computer battery working again, I am going to make a video about how wonderful feeding tubes are. The world needs that. My feeding tube is my life line. You can’t put a price on life.

What terrifies me is that I’m in such a minority. That most people don’t see the problem with any of this. That they take for granted what they think they know about consciousness and cognition. That they even think physical disability is a life of such horrible suffering that people with it would be better off dead.

Disabled people tend to be just as happy — or unhappy — as our nondisabled counterparts. But when we are unhappy everyone blames our disability. Sometimes we ourselves blame it. When really we might just have depression. Of we might have had a huge loss in our life. One woman applied for assisted suicide right after she lost her husband, I think there was a death in the family, she was grieving, and suddenly, after a lifetime of being okay with life, she wanted to die. Instead of accepting that she was in a state of grief and possible mental illness, people championed her right to have help killing herself. She didn’t have a terminal illness. She just became suicidal. In a way nondisabled people become suicidal every single damn day. And yet because she was disabled, instead of helping her live, people wanted to help her die. That’s how messed up things are. Many times disabled people asking to die, cite things like living in crappy nursing homes that could drive anyone, disabled or not, to suicide. Yet our oppression is seen as inevitable. Our depression and suicidal thoughts are seen as coming from being disabled, as natural if you’re disabled, as anyone who was disabled would think that way. Rather than as depression, as PTSD, as grief, as any of the other things that drive ordinary people to suicide.

And every time a disabled person blames their disability for their suicidal thoughts, nondisabled people pick up the idea that suicide is the natural response to disability. Often nondisabled people who themselves are terrified out of their mind at the idea of becoming disabled. But actually if you take into account an adjustment period, disabled people tend to be as happy or unhappy as nondisabled people in the same situation. Because happiness doesn’t work the way people think it does. Sometimes our quality of life gets rated lower. But you usually find that such tests of quality of life are usually surveys where they score you as having automatically lower quality of life based on what you can and cannot do with your body. Meaning it becomes circular reasoning. You have lower quality of life because you flunk a test of quality of life, that assumes that people like you have lower quality of life. It’s ridiculous but practically nobody questions it.

And practically nobody questions any of this stuff. I hate hearing about it because I know it’s a threat to my life and the lives of pretty much everyone I love. I hate hearing about it because people don’t question their own assumptions about disability, especially cognitive disability. I hate hearing about it because people get all excited about giving us the freedom to die when we don’t even have the freedom to live. When they are already killing us in so many ways, when no safeguard is good enough, and they want to make it easier.

And it’s not that I don’t understand why a person truly at the end of their life wouldn’t want to be able to die easier. In a lot of places this is possible already, but people want to make it even easier. But that means people are pressured to die faster so their children can collect the inheritance. And all sorts of other abuses. No safeguard can stop that. And it also means that disabled people can die easier, even if we aren’t considered terminal. Because it’s easy to nudge disabled people into that territory. Non terminal disabled people have always been part of the ones covered by the euthanasia movement no matter how the laws are framed. And the insurance companies laugh as people pass these laws and call themselves progressive.

Recently I went through hell trying to get a feeding tube. I would have died without it. People knew I’d die without it. And they did everything in their power to convince me to die. I had pneumonia already. I’d had it five times in three months. I was getting weaker. Without the tube, I would have continued losing weight from not being able to eat, continued getting pneumonia from stuff in my stomach coming up into my lungs. And I would have died one way or the other. It may have happened by now. I was getting worse and worse.

I’m pretty sure if I’d gotten pneumonia bad enough, they could have declared I only had so much time to live. And then it would have been a matter of pressuring me to accept death even faster. And faster. And with all the pressure I might have caved. Especially while severely ill, especially if delirious. And then what then? That’s how easy it is to kill off a disabled person already. We don’t need it easier. We don’t live in a perfect world where these so called freedoms don’t come with a horrible price for most disabled people. And I won’t ever agree with a law that allows people these so called freedoms when people don’t have the freedom to live as we would want. Such bills dovetail wonderfully with the austerity measures happening in a lot of countries right now. The oppression of disabled people is rising and so is out rate of suicide attempts. We don’t need it easier to die. It’s already too easy. It’s so hard to stay alive.

But the part I just can’t stand. I can’t stand it. Can’t stand it.

Is the part where I suddenly look at myself and see how other people see me and it’s terrible and frightening.

They see me as a list of my impairments in the most pity invoking language and idea possible. Bedridden. Wheelchair bound. Tube fed. Suffering from endless pain that has never gone away a day in my life. Nonverbal. Cognitively disabled. Constantly nauseated. Constantly ill. Progressive diseases. Motor impairments. Neuromuscular conditions. Needs care in every area of life.

They make it as ugly as they possibly can. That’s who they see me as. And they can’t see all those things alongside being a real person. Even one of those things causes them to look down on me, but all of it, and I’m grotesque and pitiful maybe but not a real person.

They don’t see that I’m an artist, a writer, a thinker, a film maker, or anything like that. They don’t see any depth to me. They don’t see my personhood or the ways I express it. Even if I wasn’t any of those words that mean I was doing something. Even when I can’t be any of those things. I’m still a human being. Because the heart of who we are is about what we are, not what we do.

Once, based on pictures, a man talked about how he’d never want his daughter to be like me. He said I was unable to sample the richness that life has offer. He hadn’t even met me. People make that judgement of me all the time. And my response has always been this.

The world is infinitely rich. Nobody can sample all of that richness. No limitation can limit it enough that you have any less of it than any other person. It’s everywhere. It’s embedded in everything inside us and around us. No matter how small the area of the world you are aware of, it’s impossible to avoid being utterly saturated with it. And no matter how much of the world you’re aware of, it’s impossible to get more of it than another person. The richness of life is sort of like love, it’s infinite in the amount that a person can experience, and the more you have, the more is there.

And while some people would disagree with me, there’s a spiritual element in all this. Nobody is in a position where they’re too severely disabled to have a spiritual life. You don’t get to a certain level of dementia and suddenly their spirituality is gone. Because its not dependent on how much ability you have at what. That sort of thing just exists.

And no, I’m not a Christian, and no, that’s not why I believe any of these things. I get so sick of people assuming that if you believe any of the things I believe about death and disability, you must be a conservative Christian. Many disabled people agree with me because they’re disabled and they have life experiences that say the same things to them that mine do to me. They include atheists, agnostics, Christians, pagans, Jewish people, Muslims, Buddhists, Hindus, and just about every religion and lack thereof that is out there. Because, surprise, disability has nothing to do with what religion you are, and viewpoints like mine usually come from a certain disability experience, not religious beliefs.

My viewpoint doesn’t come from a fear of death, either. I’m to afraid of death. I actually see death as a rather friendly thing that will welcome me into rest, as my body and soul dissipate and become part of the rest of the world, where they came from. If you need to ask, that’s my view on death. It’s even a rather beautiful thing in its own way, because it represents how everything is part of everything else. I have enough close experience to not fear death itself. But I know I only get one chance at this life. And I want to make the most of it. And I don’t want to be killed for being disabled any more than I want to be killed for being a lesbian. But in the society I live in, that kind of hate crime against disabled people — pressuring us into dying by not accepting medical treatment, for instance — is in many cases perfectly legal if you pull it off correctly. And that, that scares me. Just because I don’t mind dying, doesn’t mean I want to die before my time because some jerkass doctor wants it that way.

So yeah. Whenever I catch a glimpse of myself or my friends the way most people see us, I feel like throwing up. It’s so easy to kill us. It’s too easy. And it starts with that thing where we become grotesque, lesser, and scary, because we are disabled, or especially cognitively disabled. People fear our lives and that shifts nicely into wanting us dead which has real consequences for al of us. And it’s terrifying when people think we have no mind, and when they think that means we aren’t people.

We are people, and we think, and we are real, and we have lives, and those lives contain the same richness and beauty as anyone else’s life. And to see us otherwise, to see us as less than people, that’s the first step in killing us. Which is why I can’t bear to see it sometimes. And yet all this is invisible to the people who see us as automatically pathetic or unpersons.

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8:17pm May 2, 2013

➸ Feeding tubes and weird ideas | Ballastexistenz

My Blogging Against Disablism Day post over on my main blog. Deals with the struggle I had to get a feeding tube, over the objections of doctors who would rather I have died. And also the strange prejudices people have about how if you have a feeding tube, your life must be over. When I feel like after getting a tube I finally have the chance to be alive again.

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