Normally I don’t have that much of a problem with clichés, depending on context. Quite often, something’s a cliché because it really is true, so it’s been repeated so often because it’s a reasonably accurate way to talk about reality. But then there’s this other kind, which grates on my nerves…
There’s two of them, actually, but they kind of work in parallel.
There’s the standard cliché platitude they give you when you’re in the hospital and you’re pissed off about something. it runs something like this:
“It’s so hard to come in here and have to give up so much control you normally have over your life, isn’t it?”
Well yes, and no.
Yes, the hospital takes control away from you in ways that are completely unnecessary. Like, things where there’s no actual reason for you to give up control. And where giving up control can be not just annoying, but dangerous. But that’s far from the only reason a patient in the hospital might be pissed off at the hospital. And they try to make it sound like it’s all a personal problem, with a personal solution. And that solution is to give up control over your life gracefully, even when it makes no sense to do so.
I encountered one today that I hear less often, but that seems to stem from the same basic source, and have the same basic problems to it.
I have a staff person who’s leaving. She’s worked for me for longer than five years and knows more about my care than either me or my case managers. She does work that technicallly the case managers should be doing. They sometimes call her a third case manager. But in reality they seem to have very little idea the sheer amount of work she does, and knowledge she has.
Anyway, I am very concerned about the way management seems to be handling her leaving. Normally when a regular leaves, especially someone known to be knowledgeable about a lot of things, their last month at the least, is filled with training and searching for replacements. That does not appear to be happening. She is not getting the kind of leaving that a regular staff without her degree of knowledge gets, let alone one with the knowledge she has.
I confided my nervousness in someone.
They said, “Change is always hard.”
That is not what is going on here.
I am more prepared than most people for the turnover rate in this field. I have felt lucky the last several years to have staff who lasted for months or years. Dave Hingsburger describes the turnover in the DD field as “Thursday” and he’s right.
I have learned to balance everyday emotional connection with professional distance, so that I don’t feel hurt on a personal level by staff changes. There’s people I’ll miss more than others, because I’m human and so are they. And I will miss Hallie a good deal. Just as I miss Zack and Rick. There’s some people you do form a connection with. But it’s a paid relationship, not a friendship, and you forget that at everyone’s peril. Pretending it’s a friendship hurts everyone.
But at any rate.
The problem isn’t a personal connection I’ve formed with Hallie.
And the problem isn’t that change is hard.
The problem is that every time Hallie even goes on vacation, I end up with some kind of health crisis. And management at Howard Center doesn’t prepare either me or other staff for the sheer amount and kind of work required to make up for what Hallie normally does.
Just as an example, last time she was on vacation, there was a doctor’s appointment. And there was something urgent that needed to happen before the appointment — some blood tests. I texted my case managers, and was basically told to handle the communication with the doctor’s office myself (something I can’t do), and otherwise to just wait until the appointment to get the blood tests (which defeats the purpose of having the results of the tests available by the time of the appointment). And the whole thing was said in a casual manner, as if I hadn’t just been hospitalized and wasn’t about to be hospitalized again for problems the blood test was testing for.
If Hallie had been there, she’d have been in contact with the doctor’s office, and would’ve immediately taken me for the blood test. Things would’ve gotten done. But she wasn’t, and they didn’t. And even the doctor’s appointment was a mess because of lack of preparation.
And that’s just one example of what can go different.
She’s leaving for good now.
The case managers have not spoken a word to me about her leaving.
They apparently plan to put me on the “floater model” so that I won’t have a regular staff person at all. Which for someone with my degree of medical issues, is a disaster. I need someone with a stable level of knowledge about how my body works, not someone who changes every month.
Nobody asked me.
They never do.
I wouldn’t have even known if Hallie hadn’t told me. Either about her leaving or about the floater thing.
They’re not training replacements. There won’t be a replacement. I was not asked or even consulted about what I thuoght was a good idea.
Major things are going to change.
They want this to happen.
Everything they do lately seems to be an assertion of their power and control over my life.
It reminds me of this chart, modified from the beginning of Behaviour Self! by Dave Hingsbuger:
Behavioural language of person with a disability
English language translation of behavioural language
I want control.
Spitting out food
I want control.
Kicking the furniture
I want control.
Swearing at staff
I want control.
I want control.
Refusing to participate
I want control.
Care provider lingo
English language translation of care provider lingo
I am concerned about your behaviour.
I want control.
This programme is for your own good.
I want control.
You need to learn to be appropriate.
I want control.
Locking you into time out is helping you.
I want control.
I’m sorry but because of your behaviour you have lost your commmunity outings, family visits, favourite foods, favourite television programmes, access to your bank account, visits from your boyfriend, access to an advocate, the right to vote at house meetings, access to the telephone, all of your civil liberties and any personal dignity you have left.
I have control.
This kind of power struggle is going on right now, but nobody will acknowledge it. But they are finding every possible way they can manage, to tell me they are the ones in control of my life.
And this kind of loss of control is a huge problem. Not a platitude. Not something that it’s reasonable to adjust to. Lacking control in the ways I lack control over my life, in the ways people in the developmental service system lack control over our lives, is another one of those little crimes against humanity that gets overlooked because everyone accepts it as normal.
So no, I’m not gonna accept this gracefully.
I’m not gonna accept it at all.
And that’s not because I have a character flaw that prevents me being gracious and accepting my fate and all that. And it’s not becuse I have trouble with change.
It’s because I have enough normal human reactions left in me that it bothers me to be treated as subhuman, and to see other people treated as subhuman. (I know if they’re doing something to me, they’re doing it to others. They’re not as individualized as they make themselves sound. Most of my problems with them come down to human beings not being plug-and-play.)
And I’m getting really tired of Howard Center treating me like there’s something wrong with me for wanting the same control over my life that everyone deserves. The kind all of them have and would be furious to have even an inch of it taken away.
I’m actually becoming a lot more medically stable. I’m getting to where I can finally do a few things that aren’t directly related to medical problems. In the past, my feeling better combined with Hallie leaving would mean that they were supporting both me and Hallie in getting ready for Hallie to leave. As in, even just on a practical, logistical level, they would be helping us both prepare and vet new staff.
That’s not what’s happening.
Yet in their interactions with me these days, everything seems to translate to “I have control.”
People shouldn’t get used to being treated like this.
There’s a problem I’ve seen over and over in people like hospice workers (and this post is gonna focus on hospice, but it can be applied more broadly). And it’s one of the things that made me reluctant to out myself as a Deathling. Because there’s so many people with this problem, in Deathling-type communities, that I didn’t want to associate myself with it. Because this problem can kill people. And no matter how you feel about death personally, that’s not okay.
To describe it, though, I’m gonna start somewhere weird. I’ve been reading a book about octopuses. Or more about the author and her experiences with octopuses and thoughts about them. I’ve been struggling to find a way to articulate the problem here. And a passage from her book really helped, even though it has nothing whatsoever to do with either hospice or death.
It has to do with wild-caught octopuses captured for aquariums. But understand that I didn’t choose this passage because of my own views on octopuses. Nor about Ken’s views. Rather, because of the way Ken approaches his views on the matter. Ken is an aquarium worker who, among many other aspects to his job, helps with transporting new octopuses to the aquarium. The author asked him his opinions on catching wild octopuses, and the following is what he said (bolding in this and any other quote on this page is my own, added for emphasis):
How does he feel about capturing animals in the wild and sending them to a life in captivity? He has no regrets. “They’re ambassadors from the wild,” he said. “Unless people know about and see these animals, there will be no stewardship for octopuses in the wild. So knowing they are going to accredited institutions, where they are going to be loved, where people will see the animal in its glory—that’s good, and it makes me happy. She’ll live a long, good life—longer than in the wild.”
Montgomery, Sy. The Soul of an Octopus: A Surprising Exploration into the Wonder of Consciousness (pp. 188-189). Atria Books. Kindle Edition.
He might be right that he’s doing the right thing. He might be wrong. I’m not even going to go there. That’s not why I brought this up.
He’s come to a conclusion about why it’s okay with him for this to happen. It may be a good conclusion. A reasonable conclusion. A justifiable conclusion. A right conclusion. He might be making the right decision. That’s still not the point.
The point is, it’s his conclusion that, for instance, the octopus is an ambassador.
The thing about ambassadors. Real life ambassadors. The literal kind who exist and do work that’s mysterious to me but has something to do with representing their countries to other countries. Is they choose to be ambassadors.
It’s not the octopus deciding to be an ambassador for her species.
The author, Sy Montgomery, a volunteer at the aquarium, does not explore this matter any further or deeper.
But it’s an exact illustration of something that happens with many hospice workers and other people in the death industry. And I’ve never heard anyone discuss this in public. But I’ve seen it enough times to know what I’m looking at when I do. And I know it’s horribly dangerous in a context where you’re working with dying people.
Deathlings like to think and talk about our relationships with death. Most of us feel that we fear death less than we used to. Or don’t fear it at all. Most of us see death as embedded in life itself, as a necessary part of the cycle of life, even as potentially quite beautiful.
Those of us who’ve spent much time around actual death and dying, whether our own or other people’s, might also notice the power of Death. The sacredness of it. A depth and beauty and meaning that can’t be put into words or fit into blog posts. When Death is near, either for you or someone else, the world can become transparent to love, transparent to light. There is power and meaning there, on a level that even many atheists and agnostics will acknowledge as sacred on some level, for lack of a better term.
And there’s probably at least one blog post on what happens when you notice all that but forget to give Death the respect She deserves. But I’m not gonna go there right now. Right now, I want to talk about what happens to a lot of people who work in hospice or similar industries, who are exposed to a lot of death and develop something close to this understanding of it. An understanding that I largely share — but as with the aquarium, that’s not the point.
The point is… there’s a level on which your personal revelations about death don’t matter. The realizations you’ve come to. The way they’ve altered your entire life for the better. The way you see your job differently, as a sacred duty of sorts, now. How you’ve accepted the deaths of your patients or clients, how that’s changed you, and them, and your relationshp to future patients. All of these things that matter deeply to you.
They also don’t matter one whit on another level.
Just like octopuses don’t choose to be ambassadors. People don’t choose to develop a terminal illness. Most wild octopuses will never face the possibility of being caught and put in aquariums. Everyone will die one day. But these situations share one important thing in common.
The octopus’s viewpoint on captivity will have fuck-all to do with Ken’s reasons, or rationalizations, for participating in her capture. The octopus has her own viewpoint. And nobody stops much to consider her viewpoint in all of this. They’re too busy with their own.
Everyone’s death is their own.
That’s my main point. I’m gonna go off on a very long tangent. But I do have a main point. So I’m gonna repeat it, in bold, a LOT:
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own. Everyone’s death belongs to them. Everyone’s relationship to death, and to Death, is theirs. Theirs. Not yours. Theirs.
That means it is not your job to bring their views of death more into alignment with yours.
That means it is not your job to sit there accepting and reveling in the beauty of their death for them when that may not be how they feel, or want to feel, at all.
And it is not your job to teach them that death is wonderful and beautiful and a part of life and everything else that Deathlings often believe.
That sacredness associated with Death… a lot of people don’t seem to realize this, or realize it fully enough to put it into practice, but coming into contact with that on a regular basis comes with responsibilities. One of which is a deep respect for Death. But there’s too many to count. One, though, is not to mess with someone else’s experience of Death, even if their experience is not the one you want them to be having.
I don’t mean you should never talk about your viewpoint.
But sick and dying people can be very vulnerable. This includes having reduced defenses against unwanted outside ideas. Which includes your ideas. Which means you have to approach any job involving death with the utmost caution and care.
And you have to stay on the other side of a firm line in the sand. And you have to be the one drawing that line. Your patient may not be capable of drawing it, or aware that it needs to be drawn. It’s not like terminal illness comes with an automatic manual given to you that tells you you’re vulnerable to accidentally absorbing the opinions of hospice workers. Or what to do if you do notice.
Thsi may seem like a weird thing for me to have such an adamant opinion about. It’s because no matter how it feels to you, this can lead to situations that are downright sinister.
Talking someone into accepting death sounds so wonderful, especially to Deathlings who usually have a particular view on death acceptance. It sounds like the right thing to do.
But you could be talking someone into making a different decision about their medical treatment than they would’ve decided otherwise.
They may decide against a medical treatment that would give them a little more time in the world, time they really very much want. The hospice system is already structured to discourage life-sustaining medical treatment, so it wouldn’t take much to tip someone over the edge into making a decision that’s against what they want at the end of their life.
They may decide against a medical treatment that would not make them live longer, but might help them live more the way they want to in their time left.
They may accept a medical treatment that they know is likely to result in them dying sooner.
They may accept the idea that they need to die on a certain schedule. (I know that sounds weird, but this happens in hospice a lot when deaths are treated as lot more planned than actual death tends to work. And when you’re barely hanging onto life to begin with, you can end up having more conscious control over your time of death than you’d imagine someone would.)
They may make decisions that have more to do with the convenience of their hospice institution, than with their own desires and choices. And these decisions may end up justified in the name of accepting and coming to terms with one’s own death.
They may start receiving a lot of praise and encouragement for adopting views similar to yours, with all kinds of consequences for all kinds of decisions they may make.
You might not understand their viewpoint. You might decide that all decisions to prolong life in situations you wouldn’t want your life prolonged, are actually because of an irrational fear of death that must be overcome in order to be at peace. And then you might persuade them and wear them down. Until they are making very different decisions than the ones in their own best interest by their own values.
Just because you can’t fathom a reason someone would want to see Alzheimer’s through to the end and be kept alive at all costs, doesn’t mean there aren’t good reasons for this that have nothing to do with fearing death.
And. Even if it does have to do with an irrational fear of death. That is part of their relationship with death. It’s not your place to decide why they ought to be making their decisions, any more than it’s your place to decide what decisions they ought to be making.
And no, I’m not saying nobody should share their opinions, or persuade anyone of anything, or try to change other people’s minds, ever. But if you’re a hospice worker or healthcare professional, you’re in a position of great authority and power over your patients. And that power comes with a responsibility to do your level best not to misuse it. Which includes learning to guard against accidental misuses of power.
And when you’re dealing with the end of someone’s life, the potential for great harm from the misuse of that power is only amplified. The more that potential is there, the harder you have to work not to misuse it. And believe me, if you’re working on the end of the death industry where you’re dealing with the last days of the living, you’ve got more power than you are probably even aware of.
Michelle storms by with the crash cart. “They want everything done. She used the wrong language; she gave them an alternative. She said we can keep going.” She means Shreya, the resident. Shreya is in Michelle’s room. She comes out and goes up to the Pulmonary fellow. She looks concerned that she has done the wrong thing. I can hear her say, “Lactate’s seventeen, bicarb drip.” She opened a door she’s trying to close. They don’t know how to talk to families. They don’t know how to tell them it’s okay to stop. Doctors will almost never tell the family the patient is dying. Nurses will. Nurses have little phrases. Dana says, “actively dying.” Lori will say, “it’s irreversible.” When they ask me how the patient is doing and it’s bad, I’ll say, “You should prepare yourself for the worst.” Some nurses will try and sell DNR orders. They’ll ask, “Would you want to have chest compressions?” and they’ll clasp their fingers together and move their upper body like a jackhammer, or, “Would you want to be shocked?” and pretend they’re holding paddles onto a chest and then jerk their body like they got Tasered.
Kelly, James. Where Night Is Day: The World of the ICU (The Culture and Politics of Health Care Work) (pp. 76-77). Cornell University Press. Kindle Edition.
The above passage was written by an ICU nurse who has no problem with the practice of ‘guiding’ families in the direction of DNR/DNI (Do Not Resuscitate/Do Not Intubate) orders.
It’s a relatively common point of view that runs like this: It’s cruel to prolong life when the only thing a person is doing is suffering. Quality of life is more important than quantity of life. Patients and families who don’t choose DNR/DNI are either:
irrationally afraid of death
driven by strict religious beliefs (and religious beliefs that contradict the medical consensus are treated as a bad thing in this kind of context)
unaware how severely disabled a person often is after a resuscitation
unaware they’re “allowed to let go”
unaware of what a resuscitation actually looks like (pretty brutal, often)
unaware of the low success rates of resuscitation (because on TV shows resuscitation almost always works, whereas in real life it almost always doesn’t, or doesn’t work the way people expect it to)
So they genuinely believe they are sparing a person needless suffering by using the above tactics talk to people into DNR/DNI orders. They think people who “want everything done” are simply ignorant of the medical realities.
My mother, who has coded before and probably will again (we have an inherited neuromuscular condition, hers is more severe at this point in our lives), does not have a DNR.
Doctors and nurses are always surprised, because she was a respiratory therapist for decades. They say they’d expect any former medical professional to want a DNR order.
She says it’s because she’s a former medical professional that she does not have a DNR order. She wants to live, is in her seventies, and knows firsthand the extreme bias in the medical professioin against both elderly and disabled people. She’s had doctors refuse to treat her because of her age. She knows we already have things stacked against us and that a DNR would be dangerous.
Laura Hershey, an activist from the Independent Living Movement (a branch of disability rights mostly made up of physically disabled people), had a friend in the movement who got talked into a DNR in this manner. This is Laura’s account of what happened, written November 2, 1999:
A doctor entered, on his rounds. […] Becky and I both jumped in to tell him that Ginny wanted to talk to him about the DNR, that we thought she wants it revoked.
For the next fifteen minutes, the four of us engaged in a conversation that was difficult, both mechanically and emotionally. Through a painstaking exchange of yes-no questions, nods, scratchy notes, and lip-reading, Ginny conveyed her desire for every effort to save her life.
The doctor heard this message, was willing to hear it; but his obvious biases made him subtly resistant. Here’s how he posed one question to Ginny: “Would you want to be put on a respirator?” Ginny responded with a fearful, uncertain look. I instantly insisted on rephrasing the question like this: “If you couldn’t breathe on your own, would you want them to use a respirator to save your life, rather than letting you die?” Still with an apprehensive expression, Ginny nevertheless nodded, yes.
By the end of the conversation, Ginny had indicated unequivocally that she would want ventilation if necessary to save her life; and that she would want attempts made to start her heart if it stopped beating. The doctor agreed to remove the DNR order immediately.
Ginny had been weak with pneumonia, and with a trach making communication difficult, and they talked her into signing a DNR she didn’t want to sign.
I can say from firsthand experience that being sick and weak really does make it hard to fight off other people’s opinions of what is best for you. This is even true when you’re 100% sure you disagree. When I was hospitalized for aspiration pneumonia (and was also weak from malnutrition) and they were trying hard to talk me out of a feeding tube — I knew I wanted the feeding tube. And without having had a lot of people in my corner, I’m not sure I would’ve been able to hold out for survival much longer. Being weak even simply on a physical level makes it very hard to fight these things.
Ginny’s story continues, by the way. This happens:
That was about a month ago. A lot has changed since then, mostly for the better. Ginny regained her voice, and began growing stronger once the infection left her lungs. She has repeatedly stated her intention to go on living, in front of a variety of witnesses. Her friends have stayed in touch with her, and her situation.
About three weeks after my visit with her, I heard that Ginny’s gradual recovery was abruptly interrupted when she went into respiratory failure. Emergency measures saved her life, and her recovery now continues.
Ginny would not have survived this if the DNR she was coerced into signing had stayed in place.
If you ever doubt the power your opinions might have, think of Ginny. Pneumonia made her weak enough to have trouble fending off other people’s opinions. It’s very likely that whatever nurse or doctor talked her into signing the DNR, used subtle persuasion of the sort described in that book by the ICU nurse. It doesn’t take much persuasion or pressure when you’re already vulnerable.
I was simply walking down the hall of the hospital last time I was there, and there was a group of residents speaking to an attending. The conversation I overheard was alarming. They’d saved the life of a cardiac patient. He was set to go home soon, without major complications. The patient was extremely happy about this. The attending was very unhappy about this and wanted to tell the residents why.
So the attending explained that while the man was going home without complications, that wasn’t the only possible outcome. And he didn’t think the man’s family should’ve chosen to tell the doctors to save his life. He said it was possible the man could’ve ended up with a severe disability. And therefore, it would’ve been a better decision to let the man die even though his life was saved and he was extremely happy with this outcome.
Medical professionals frequently believe this stuff is morally neutral information. That in trying to persuade people to choose death over life, they are simply giving people the facts. The thing is, you can choose which facts to give people, and what manner to present those facts in, and “giving someone the facts” turns into an act of persuasion. And you don’t even have to mean to do so, for this to happen.
If You’re Interested In Power & Control…
Anyone interested in the use and misuse of power in human services professions, could do a lot worse than reading Dave Hingsburger’s book, Power Tools. I always plug this book. It’s extremely short and easy to read, but contains a lot of important information on how to recognize your power over other people and how to do your best to avoid misusing it. It’s available from Diverse City Press. Or Amazon.
He also wrote another book of the same size, shape, and potency, called First Contact. It’s about communicating with people with (presumed) profound cognitive impairments. And it’s also well within the topic of this post, given that this level of cognitive impairment is often the fate that medical professionals are trying to save us from when they push DNRs at us. You might want to pick that one up at the same time you get Power Tools. They go well together, and both of them contain real-world wisdom that applies to a lot of everyday life situations beyond the ones explicitly described in the book.
While I’m shamelessly plugging Hingsburger’s work, he has a blog called Of Battered Aspect. And there’s a longer review of both Power Tools and First Contact on the website of the old disability rights magazine, Ragged Edge, called Same, Different, Human. A quote from the review that mirrors my thoughts on these books:
The subject matter may appear limited to the service systems concerned with people with intellectual impairments, and Hingsburger’s focus is the individual rather than society. Nonetheless, I commend these books to you.
I read Dave Hingsburger as an ethicist. Not an ivory-tower Ivy League ethicist, mind you, but rather one who worries how to live well amid the blood, the shit, and the chains that surround him. Instead of offering moral axioms from some fake-objective standpoint and then applying them to whitewashed situations, he acknowledges the ways in which the commitments he has made and the messy situations in which he finds himself shape his moral development and his moral outlook.
Many of the other writers on my shelf take a political approach to the problems of power and powerlessness, to the problem of disability, asking how communities, organizations, nations should act. What does justice demand? they ask. How can we address injustice?
Hingsburger’s stance is more ethical than political, though it is also concerned with disability. How, he asks, should I, an individual, respond to the people around me? Very often, the people around him, the people to whom he is responding, are disabled people. It’s not that he pretends injustice away, or that he treats it as irrelevant; it’s just that even when he addresses injustice, he confronts it in an ethical sense, as an individual. Even when he addresses the politics of disability — the self-advocacy movement — he is concerned with his relationship to it.
His primary ethical concern is interpersonal, and his rule is awareness: awareness of the moral risk in any important action and awareness of one another. “People don’t hurt people. People hurt things,” he quotes Dick Sobsey as saying (First Contact, p. 20). And he acknowledges that such awareness, such self-knowledge, is much more difficult than it looks.
Like Cal Montgomery, the author of the review, I can’t stop recommending these books. To the point I keep a supply of multiple copies each because people walk off with them and forget to return them.
Now back to your regularly scheduled blog post on death and octopuses…
When I was writing this post, I tried to Google statistics on resuscitation. I found a news article alarmed me. Not because of the statistics, but because of the way it was point of the article was to inform people that resuscitation in real life is not like in the movies, either in terms of statistics, outcomes, or the level of violence it does to the person’s body. But the article made it impossible for me to understand the statistics.
See, every time it mentioned death, it mentioned severe disability in the same breath. I was trying to look up survival rates. But it was so ambiguously worded that I couldn’t tell whether survival with a severe neurological impairment requiring lifelong care counted as survival for the purposes of the article. And no matter what you think of the “quality of life” issues involved (I, like Laura Hershey and many other disability rights activists, am extremely wary of that phrase), being alive and unconscious is still being alive. And there’s plenty of new evidence that people presumed unconscious based on outward responsiveness are not always unconscious at all. Which may horrify you in completely different ways, but it’s still being alive. And I never did figure out what the statistics in the article meant.
Disability is often considered a fate worse than death. And while I consider the fear of death and the fear of disabiliy deeply intertwined, many Deathlings, and many hospice workers, have conquered one without touching the other at all. An extreme fear of disability, combined with a lack of fear of death, can make people view death as the answer to a type of disability they greatly fear.
This is an extremely common perspective among medical professionals, including hospice workers. And it’s the entire point behind DNRs, living wills, and the like. These are not documents that were created to offer a neutral set of choices to people. They were created to make it easier to say “This is the level of disability at which I would rather die.” You can use them to say other things, but there’s pressure not to, and it’s harder to get such wishes upheld in any circumstances where someone disputes your wish to stay alive. It’s much easier to use a living will to die than to use it to live.
Anyway, medical professionals have been shown to rate disabled people’s quality of life lower than we rate it ourselves. There’s a very jargon-heavy paper called Quality of Life, Disability, and Hedonic Psychology (that’s a PDF link) that deals with the topic of disability and quality of life (abbreviated QOL in the article) in a fair bit of depth.
One belief about QOL has been very widely demonstrated. Nondisabled people believe that the QOL of people who live with disabilities is extremely low. This belief will be termed the standard view of the QOL of disabled people. The standard view is faced by an apparent falsification: When disabled people report about their own QOL, they rate it only slightly lower than when nondisabled people self-report their own QOL. This produces the anomaly of the QOL of disabled people (Amundson 2005). The anomaly is the pair of conflicting assertions: the standard view on the one hand, and the conflicting self-reports ofdisabled people on the other.
In fact, nondisabled health care professionals judge the QOL of disabled people to be even lower than the judgments made by nondisabled people who are not health care professionals (Duckworth 1988; Brillhart, Jay, and Wyers 1990; Bach and Tilton 1994; Gerhart et al. 1994; Albrecht and Devlieger 1999).
If hedonics researchers believed that disabled people were kidding themselves about their own QOL, nothing would stop them from saying it. I therefore propose that we ask them who’s right about the QOL of disabled people. Does hedonic research support the standard view that disabled people have an intrinsically low QOL? Or is there evidence that the standard view is mistaken, and the disabled people who report a high QOL are correct when they do so? Hedonic psychologists may not have the last word in the debate, but their contribution must be considered. The results are these: according to the experimental results of hedonic psychology, the judgments of nondisabled commentators about the QOL of disabled people are far more likely to be mistaken than are the self-reports of disabled people.
So basically, nondisabled people in general assume that disabled people are much unhappier than we are and have very little in the way of ‘quality of life’. And medical professionals judge our quality of life to be even lower than your average nondisabled person judges our quality of life to be. Meanwhile, disabled people are roughly as happy or unhappy as nondisabled people (there’s many possible reasons for our quality of life to rate slightly lower that don’t actually reflect disability as much as the way it’s tested, but I don’t have the time or space to get into all the details), and certainly much happier than either nondisabled people in general, or medical professionals, assume we are.
So if you’re a medical or hospice professional, advising dying people on life and death decisions involving disability, you’re also likely to be judging our quality of life much lower than it actually is. And as a medical professional, you’re more likely to be biased in that area than someone who isn’t a medical professional. The presence of a known bias, like the presence of power, requires much more increased carefulness to be taken with how you wield power around people.
And the above is just one major way this can go wrong. It’s a way I and many other disability right activists are highly familiar with, which is why I was able to go into so much depth. I could really go on all day. But hopefully it’s enough to show you there are dangers you might not even be aware of.
So now that I’ve tried to get way too much information crammed into one blog post, the basic point I want to make?
Everyone’s death is their own.
Being accepting of death is a wonderful thing, in my eyes. But there are many different ways of accepting death. And no matter how valuable it is to you that you have accepted death, you have to be really careful as a healthcare worker, not to impose your own ideas about death on people who might not want them. However an octopus feels about captivity is the business of the octopus, and how a dying person feels about their own death is the business of the dying person.
Everyone’s death is their own.
Given the biases of healthcare professionals around disability, and the power they have over disabled people (and dying people are generally either disabled or about to become disabled), it’s especially important for them to keep this in mind. It’s very easy for death acceptance in these circumstances to become something much more sinister.
Everyone’s death is their own.
But it’s also a matter of respect: People’s death is deeply personal and for lack of a better word, sacred. And people’s own death belongs to them. It’s not yours to mold into a shape you find more fitting. No matter how appealing your own beliefs about death are to you. The other person might have very good reasons for beliefs that mean something to them.
Everyone’s death is their own.
There really is an idealized death, or an idealized set of deaths, that is pushed wholesale on hospice patients. People who work in hospice often come to absorb this view of death, and of how death should happen. But actual patients of hospice may have very different experiences. Experiences they are afraid to even bring up out loud, because of the power relationships inolved.
Everyone’s death is their own.
And if you care about a person, you want to meet them where they’re at. It’s impossible to truly know another person, to even begin to understand them, if all you can do when you see them is look in the mirror. And when you get too wrapped up in your own reflection, you can’t see anyone else, you can’t know anyone else, you can’t connect with anyone else. And if you can’t see who someone is even a little, you certainly can’t accurately perceive their relationship with death. Nor can you respond to it in a way that’s even halfway adequate.
I’ll leave you with an excerpt from Dave Hingsburger’s First Contact:
When considering making contact with people who have multiple disabilities – those who are considered to be so significantly mentally disabled that they are in a “vegetative” (that’s what it’s called) state – there is a huge obstacle. Prejudice. Yours. Mine. Ours. Against them. The difficulty here is that prejudice will feel like pity. You may be overwhelmed by a sense of hopelessness first, and then, if you examine the feeling long enough, terror.
They can’t be “like us” because then the logical extension of that is that they must be “feeling in there” and what they are feeling in there is what we’d be feeling in there – desperation, hopelessness, isolation, loneliness. The misuse of your sense of identification with the person inside that body will lead you to think horrible thoughts.
“I’d rather be dead than be like that.”
“If I was like that I’d like to be smothered.”
Well, back off. This isn’t about you. Catching a first glimpse of a soul inside a body that is so different from your own can be frightening, true. But it can, if you work hard enough, be exhilarating. I know, I know, I know, you have to “walk a mile in their moccasins.” The temptation is to engage in an incredible waste of time and psychological energy – spending time imagining what it would be like to be you inside them. How egocentric is that?
The issue is coming to understand and to get to know what it’s like to be them, in them. That’s the joy of contact, of connection. It allows us other perspectives. The placing of ourselves inside someone else and then imagining what it would be like, is not learning – it’s like masturbation but without the stickiness. And while it’s fun, and it is fun, it’s not particularly valuable.
And it gets in the way.
How can you make contact with someone when all you see reflected in their eyes is your sad face? Get out of the way. Understand that you are you. You are only you. Now look again, look past your own reflection and what do you see?
Some one else.
Cool, huh? Even cooler is to discover who that person is. To do this you need to step by prejudice. Please, please, please, don’t delude yourself into thinking that you don’t harbour anti-disability sentiments inside your heart. Please don’t say, “but my child…” “but my best friend is…” or even “but I’m…” We everyone of us is prejudiced against those who are different. Awareness is the first step.
And that is why obtaining a copy of those two books is so very worth it.
And remember — everyone’s death is their own. If you work with dying people, don’t stare at your own reflection. Get out of your own way and deal with them, and their relationship with death, on their own terms, not yours. And whatever you do, don’t use their death as a vehicle for your own desire to be close to the beautiful side of death. I promise it will be better for you, and more importantly, for them.
I’m going to lead with a quote from Jim Sinclair and discuss it:
Most autistic people who are capable of formulating questions have frequently experienced the following scenario: We ask for information that we need in order to prepare ourselves for a new experience. Instead of answering our questions, NT people tell us that we don’t need to ask these questions at all. We just need to relax and stop being so anxious. The fact is that being able to ask questions, and getting clear answers to our questions, and thus knowing what to expect, are often the very things autistic people need in order to be able to relax and not be anxious. Asking a lot of questions about the details of a situation is usually not a “maladaptive behavior” that increases an autistic person’s anxiety. More often it’s an adaptive strategy that an autistic person is using to reduce anxiety or to prevent being in an anxiety-provoking situation in the first place. It’s very important for us to have thorough explanations and ample opportunities to ask questions.
So first off be aware this quote is from a specific context. It’s an extremely long article on specific experiences of autistic people’s self-created communities and cultural values. So if your first impulse is to think “But it’s not only autistic people who’d encounter this,” you’d be totally right. But you’d also be missing the fact that it’s quoted out of context from an article that is about autistic people, so it’s gonna mention autistic people explicitly. Just like an article by and about transgendered people is gonna mention transgendered people explicitly. It doesn’t mean it doesn’t apply to anyone else in the world.
Anyway, I mostly agree with Jim. My only disagreement is the role xe puts on anxiety in the first place, when I often encounter this in situations where anxiety is not even a factor. When it is a factor, it works exactly how xe says it works. But it’s not always a part of things in the first place, and then people just drag anxiety into it as if you must be anxious because they think you are.
Example of something that had absolutely nothing to do with anxiety:
I go into the emergency room around 8:30 pm one night to be seen for cellulitis. I’ve been told (I later find it’s untrue) that I’m not allowed to bring meds from home to the ER. I know that I’m likely to still be there at 11 pm, when I am due a dose of hydrocortisone that is extremely time-sensitive: I can’t survive without hydrocortisone and my body makes absolutely no cortisol. I know that this hospital doesn’t have liquid hydrocortisone that can go through a J-tube,and that the pharmacy has to make a suspension by hand, and that this takes time. So I know they’re gonna need advance notice if I’m going to get this medication on time.
So after describing the infection, I mention to the triage nurse that this is gonna be a serious issue if the med gets missed or delayed, so they probably want to prepare for the situation in advance. I ask if this is something they can do and be aware of so I’ll actually get the meds. I’m doing this in front of an on-call staff person who doesn’t really know me that well.
The on-call staff person immediately starts all the crap they’re taught about calming me down, redirecting me, making sure I don’t have any anxiety, and telling me not to think about the hydrocortisone. I get pissed off and tell him it’s important. He tries to “de-escalate” me. It goes round and round and round.
The time gets nearer, and I am now back in an ER room, it’s approaching 11. So I’m without information about whether they’re working on this, and want to make sure it’s actually happening. So when the doctors and nurses are back there I’m talking to them about it.
And the staff person is saying it’s not eleven yet so I need to stop ‘worrying’ (preparing people in advance for something that needs to be on time and takes time to do, especially in a busy emergency room when I’m not there for adrenal insufficiency) until it’s actually eleven at which point we can address this.
And any time I seem annoyed with him, or concerned, or even try to discuss the matter, he says it’s anxiety and I just need to calm down and not think about it and everything will work out fine.
Everything did work out fine, but only because I did prepare them in advance, so they had time to write the orders and get the suspension manufactured in their pharmacy and delivered to them by eleven.
I also learned you are allowed to bring meds into the ER, that night.
But anyway, that’s a good example of where there was no anxiety at all involved. I was not trying to alleviate anxiety by giving information and asking questions, I was trying to get something practical done that required advance planning.
I might have ended up anxious if there were signs they weren’t listening to me. But in that case calming down wouldn’t have been relevant, what would’ve been relevant would be finding effective ways to advocate for what I needed. Which generally requires talking about something, not pretending it’s all gonna be okay.
Doing what the staff person said in that situation wouldn’t have just been anxiety-provoking, it would’ve been physically dangerous to me.
Often the information I am asking for, when I ask questions, is a similar situation: I need the information in order to make an informed decision about something important. Other people may not know why I need that particular information, but I need that information. Without the information, I can’t make the decisions I need to make. And the decisions may be, and often are, important medical decisions.
And I’m often deliberately left in the dark. People give me as little information as possible. And when I ask for information, it’s treated as an emotional issue: Frustration, anxiety, pushiness, stubbornness, whatever. When if you just give me the information, I generally know what to do. And people are always trying to fix my emotions (as if they need fixing) instead of just giving me the information I need.
Quite often, anxiety won’t even arise until you withhold information from me. And then anxiety is just the by-product of a situation that will go away once I have the information. But even so, I’m not usually asking questions to make anxiety go away — even if it does make anxiety go away to get the answers. I’m asking questions to get information that I need for a practical purpose. Anxiety, if it happens, or goes away, is just a by-product of the situation, not the focus of the situation.
There is no faster way to cause me some combination of anxiety, anger, rage, fury, and frustration, though, than to try to fix my emotions rather than try to give me information. This goes double if you try to fix them by manipulation that you think is subtle. It’s not. I know what redirection is. I know what it means when you accuse me of ‘escalating’ — as if you have no part in making the situation worse. I know what all of your jargon is and what you have been taught to do about ‘situations’ like this one.
And the best possible thing you can do is give me all the information I need, including information I don’t have access to, or assist me in obtaining the information I need, as quickly and thoroughly as possible. Be on my side, don’t sit there trying to calm me down. And certainly don’t tell me to take a deep breath and calm down, focus on something else, watch television with you, or some other random crap.
And by the way, the respectful way to approach a discussion about whether I have anxiety I want calming down from, is to ask. And ask in a way that makes clear you will accept any answer, not in a way that makes it clear that you expect me to say “Yes, I am making myself anxious by thinking about this and need to take my mind off it” or something.
And then if I do say yes, then you can ask me if I want help finding strategies to do so. And then you can ask me about whether any particular strategy works. You don’t just apply strategies at me or shove them down my throat.
It’s really not that hard to be respectful.
But it’s very easy not to be respectful.
It’s not respectful to jump in and assume that I’m making myself anxious and want you to help me calm down. Or that I’m making myself anxious and need you to help me calm down whether I want you to or not.
It’s not respectful to jump in and start manipulating me into calming down. By manipulating, I mean all the things you have been taught about how to calm people down without telling them that’s your actual intent. Like distraction, redirection, and other things that rely on the person not knowing what you’re trying to do. Anything where you’re not being open and explicit about your intent to calm the person down, and anything that uses covert force, is manipulation.
Staff manipulate clients more than clients manipulate staff, but clients get called manipulative for doing ordinary people things that have no manipulative intent whatsoever. So it might surprise you to hear these things described as manipulative. But they’re manipulative. (Clients do manipulate staff sometimes, but we generally do it because we have to in ways you may sometimes have trouble understanding. Staff are taught to habitually manipulate clients, it’s very hard to be staff and not manipulate clients.)
Just about every strategy for changing someone’s behavior and feelings without them knowing is maniplative by nature. That’s what manipulation is. Many strategies for changing people’s behavior with them knowing is manipulative. All behavior modification is by defintion manipulative whether it’s obvious behavior mod or subtle behavior mod.
Manipulative is not always bad but it is always an exercise of power. Staff manipulating clients is especially dangerous at the best of times, because of the direction the power flows. It should not be something you just pull out of your pocket every time you think someone needs to calm down.
It also helps not to be afraid of other people having and showing emotions other than happy shiny ones. Sometimes people get stressed out, pissed off, freaked out, upset, and all-around discombobulated. Sometimes people show it. It doesn’t always need to be fixed and tidied away to accommodate your discomfort. And often it’s a sign something is going wrong — like not having enough information, or not being listened to, or not getting the chance to give the right information to the right people — not a random thing a person is just feeling for no reason that needs to be brought under control before you even understand it. These are perfectly natural reactions, you don’t have to manage them for us at the first sign we’re less than 100% chill.
Attempts to manipulate me into calming down will nearly always backfire because I can spot the manipulation a mile away and will get pissed off. If you don’t want that result, don’t manipulate me. Treat me with respect instead. It’ll get you far.
This morning I watched a TED talk called Don’t Regret Regret. Now I wonder if my big regrets are somehow weird.
This is a graph they used to talk about what people most regret in their lives.
Most of my regrets are failures of love, failures of ethics, ways in which I have wronged people, and I don’t really see those listed although some of them could fall under self, family, friends, spirituality, and community, if you stretched them.
I do wish I’d never set foot in a school, but if you asked me to list my biggest regrets that wouldn’t even come up in my head, so i’m surprised education and career are so high.
Possibly the thing I’ve done concretely in the world that I most regret is something I may never be able to discuss in public. And that’s okay — privacy is a thing. Just because I talk about a lot of things other people see as private, doesn’t mean I don’t have a right to determine what I am private about. But I can say that I did what I think was a profound betrayal of another human being in the way I used power over them. It wouldn’t have looked like much — or like anything bad — to most observers, but most observers wouldn’t have known shit about what they were looking at. It was bad, I am sure it hurt the person, and I have a hard time forgiving myself for it.
I also regret a lot of things I took part in that I am told that because of my age at the time I really wasn’t 100% responsible for them, especially given what I was led to believe by my family. (Sorry for being overly crytpic here.) But it makes me wonder at what point a person becomes responsible. Which I suspect depends on the situation and the person, rather than being something set in stone that just happens.
At any rate, I have tiny regrets that fit parts of this graph, but my big regrets really aren’t on or near the top of the chart here. Or on the chart at all. The little regrets are ones that might come to mind time to time, but are easily banished and forgotten. And that would certainly not pop into my head if you asked me to name 12 or even 24 things I regretted.
I wonder if I’m weird or if the way they came up with this graph somehow doesn’t represent how most people would see their regrets.
So there’s this common trick with developmental disability agencies, among many other types of agencies. It’s deliberate, it’s passive-aggressive, and it’s obnoxious.
You start asking them to follow laws, regulations, or agency rules that would require they provide either more or better quality services.
They respond by discovering rules they’d never bothered following before, that allow them to provide less or lower quality services. And then insisting that they absolutely must follow these rules.
I came to Vermont with an IPP. They call them different things in different states. In California it’s IPP (Individualized Program Plan), in Vermont it’s an ISA (Individualized Support Agreement). It describes you and the type of services you need and why, at least in theory. Usually it has goals and ways of reaching those goals.
I had the luck of having a very well-written IPP. My first case manager in California had written an IPP on which I was unrecognizable to anyone who knew me, and she had literally made things up and deliberately left things off. I had signed something saying I had been at the meeting, and she claimed that my signature meant I agreed to everything on the IPP. When I objected, she claimed she wouldn’t be my case manager anymore and I was on my own. (There is a way to be self-managed in California, but it turned out she was lying to me for over a year and someone was listed as my case manager, either her or someone else I never met.) She told me if I didn’t like it, write it myself. I was completely incapable of writing my own IPP. I couldn’t even tell anyone what needed to be on it without being asked the precise right questions and having a great deal of difficulty answering them.
So I ended up contacting a disability rights activist from out of state who had worked in the DD system and written many IPP-like documents in his time. He painstakingly asked me questions over AOL Instant Messenger for weeks and put together an accurate IPP, which then got put in my file as my official IPP, and I didn’t have IPP trouble from there on out. It got modified over the years with time by different case managers but the basics stayed the same. I’m very grateful to that person.
So when I moved to Vermont, my first case manager was as incompetent as my first case manager in California. And part of my IPP involved a section on how to communicate with me in ways that were cognitively accessible to me. I have problems with understanding language, and understanding certain concepts. I often need things explained to me or rephrased. At minimum. He was asking me to do important things, that I couldn’t understand because he used jargon I was unfamiliar with. When I asked him to explain, he either wouldn’t explain or would send over the same stack of papers I couldn’t read. This kept happening, and the more it happened the more he’d insist I agree to do something I didn’t understand what I was agreeing to. And I wouldn’t agree without understanding, and he started failing to communicate with me at all except to demand I agree to this thing.
There were other, worse things going on too, but I want to focus on the IPP.
So my IPP contained an entire section on how to effectively communicate with me. I and my DPA both told him a zillion times to comply with this section of the IPP. They wouldn’t. (We were also asking that they stop sending two staff people who were incompetent to the point of dangerous med errors. And one was crossing lines in terms of religious proselytizing and forcing me to use my own resources to promote his religion.. They kept sending them to my apartment no matter what I said, and if I turned them away I was being charted as “refusing all services” even though there were dozens of staff available to choose from who were able, willing, and even eager to work with me. I was told nobody liked me and I had to take what I could get. So there were other issues happening that we were fighting them over.)
But one day I got a letter in the mail saying that because of what they’d read in the IPP, they were recommending that I go to residential care for my safety and the safety of staff. The only way I could avoid residential care is if I provided detailed documentation from my California psychiatrist and the Regional Center system of my behavior plan. I didn’t have a behavior plan in California, so there were no documents to produce. It turns out they’d found reference in my IPP to past aggressive behavior, and suddenly following my IPP became all-important if it meant shunting me into residential care to get rid of me.
Following the part of my IPP about communication accessibility, of course, never became a priority.
That’s an example of finding the rules they want to follow and then following them to the letter. And doing so entirely as retaliation for asking them to follow some other rule they have no intention of following. And then they can say, “Well you asked us to follow the rules, that’s what we’re doing!” It’s usually in retaliation for making demands. And since it’s within the letter of the law if not the spirit, it can be used to withhold services (including as retaliation) without appearing to break any rules.
So if they start discovering new rules, that’s one thing they might be doing. It’s extremely manipulative on their part. (Agencies always manipulate clients far more than clients manipulate agencies, but are quick to call us manipulative for things that aren’t.)
Sometimes they’ll even make up rules that never existed and pretend they’ve been rules all along. Or create new rules and try to pretend they existed.
At one point I was told that in the 13 years I’d been receiving services from an agency, from a wide variety of staff and case managers, with a wide variety of attitudes towards services, something they’d been doing had been against the rules the entire time. They said nobody had told me until now. I don’t buy it. They just wanted to stop providing a certain kind of assistance, and to claim that to get that assistance I’d have to leave my home. They’ve had no problem over that 13 years telling me when there was a kind of assistance that was against their rules or that they wouldn’t provide, so I don’t buy that it was just nobody felt like they could tell me it was against the rules.
(It involves doing things for me without any pretense of Independence Theater involved. Which, under federal law, they have to do if I can’t do something, or can’t do it consistently or safely. They have never until now given me a shred of trouble over this issue except in the area of community access hours — at which point they had no problem telling me there was an issue — so I don’t buy anything they’re telling me about this.)
This is, again, retaliatory, and in this case pretty vicious retaliation. And manipulative in more than one way. They are attempting to convince me that their “service model” doesn’t support doing what they’ve been doing for the past 13 years, and that therefore I must leave my own home in order to receive the services I need. They are attempting to do this by threatening to (or really going through with) do less and less for me, thereby putting my health and life in danger, and hoping that’ll herd me through the door into their other program. This is both against federal disability law and massively unethical, but they don’t care about either of these things. They get away with it, and they can claim to be following the rules, so they do it. It’s simply an attempt to maneuver me where they want me, and punish me for complaining. If I hadn’t told them to follow the rules, they’d never have discovered this and other rules to punish and maneuver me around with. And they still — of course — magically haven’t discovered any of the rules we’ve been telling them to follow. The actual rules that we know exist.
It should be noted that when I ask agencies to follow rules, it’s generally my safety at stake. When agencies ask me to follow new or arbitrary rules, it’s generally not their safety at stake, and it generally puts my safety more at risk. They have massive power over my life, I have very little over theirs, and this is one way of them misusing their power. The situation is not equal in any way. (More on false equality in another post, hopefully.)
So that’s the basic sequence of events:
You ask them to follow a rule they are not following, that would help you if you followed it.
They retaliate by finding a different rule (or making one up), one that hurts or inconveniences you, and following it to the letter. This is punishment for asking them to follow rules.
They will almost always fail to follow the rule you told them about. If they do follow it, they will try to find ways to follow it in letter but not in spirit, or follow it in as small a way as they can get away with.
They will, however, follow the obnoxious rule they found or made up, as thoroughly as humanly possible.
Most people have never heard of Vasili Arkhipov, but it’s quite likely we all owe our existence to him.
He was in the Soviet military during the Cold War. While serving aboard a submarine, he witnessed death and suffering from radiation during a nuclear accident. This had a profound impact on him.
He played a role in the Cuban Missile Crisis that changed the world in ways the Americans were not even aware of until relatively recently when his deeds came to light.
The Americans didn’t know that some of the submarines they were dealing with during the Cuban Missile Crisis were armed with nukes.
The Soviets in these submarines were suffering extreme physical and mental deprivation that was affecting their judgement. They were overheated, dehydrated, exposed to high levels of carbon dioxide, going without food, and being bombarded by intimidation from the Americans, so they were pushed to their physical and mental breaking point. Not a good situation for making rational decisions no matter how good your training is.
Vasili Arkhipov was aboard one of the subs.
In order to launch a nuke, normally there were only two people who had to agree: The captain and the political officer. Arkhipov was in a unique position, because he was second-in-command on this submarine, but he was also commander of the fleet. This gave him a third-person veto power that didn’t exist on the other subs.
The captain and political officer aboard his sub decided to launch a nuke at the Americans. A nuke the Americans were not even aware existed — they didn’t know the subs were armed in this way. If the captain and political officer launched the nuke in the situation they were in, with the USA and USSR armed to the teeth, it’s likely that all-out nuclear war would have devastated most of the planet shortly thereafter.
Vasili Arkhipov remembered what radiation did to people. And he argued against using the nuke. He used the veto power he had. It took an argument. The captain still wanted to do it. But Vasili Arkhipov prevailed and we are all still here as a result.
For his efforts, by the way, he returned to the USSR in disgrace, being told he’d have been better off going down with his ship, and never talked about it due to shame and embarrassment.
Vasili Arkhipov’s story is dramatic. And now we know that he was one person standing in the way of all-out nuclear war.
What we don’t know is how many other times things like that happen, day after day, because someone decides to be the one person who says “No, this isn’t right.”
Probably the world has been saved many times over by the actions of people who will never understand the effects of their actions, and will never be recognized for them.
And even when it’s not on the scale of saving the world, being the one person who realizes the right thing to do and then does it can have a profound effect on the lives of other people.
Which means each of us has an obligation to try to be that person.
It doesn’t mean we’ll get it right.
It doesn’t mean we’ll know the effects of what we did.
It doesn’t mean we won’t be punished for our actions.
But it really is that important.
The developmental disability agency that provides me services seems to have a culture or policy that works against people doing the right thing when they see something wrong going on.
It works against them in many different ways. There are all kinds of pressures on people. To look the other way. To decide they aren’t responsible if they don’t do anything to help a situation. To assign all responsibility for the situation to other people and factors besides themselves. To not act. To not do the right thing. Even if their conscience is crying out that everything they are participating in is hurting people, and that they could step in and do something.
A lot of agencies have this kind of culture, office politics, whatever you want to call it.
But not all agencies have it in the same way or to the same extent.
I used to receive services from a developmental disability agency in California. There was a week where I wasn’t getting services. I ran into trouble rapidly with food, water, medication, hygiene, and everything else I couldn’t do.
I somehow dragged myself into their office, turned my communication device up as far as it would go, and say I hadn’t eaten or had water and wasn’t leaving until I did.
The head of the agency came out of nowhere, drove me home, cooked me meals, made sure I ate, made sure I got water, and cleaned my apartment.
I didn’t ask him to do this. He just saw there was a problem and stepped in to solve it.
That impulse to step in and do the right thing is a good impulse.
I have seen agencies that foster that attitude.
I have also seen agencies, like my current one, that do their best to suppress such pangs of conscience and their results, in their employees.
The thing is, even in an agency culture that tells you to look the other way, that it’s not your fault, that it’s an imperfect system failing someone and not in any way you as a part of it? You can still fight against that. You can still be a Vasili Arkhipov for someone. My agency sure as hell tries to blur the distinction between “We can’t do that for you” and “We refuse to do that for you,” but there is a distinction and it’s your responsibility to figure it out.
And if you do step in and do the right thing… you may not save the world from nuclear war, but you might save some people from needless suffering or even death.
And if you do that only once you’ll have had a major impact on the world for someone.
You can resist the pressure to pretend it’s not happening, pretend you have no responsibility, pretend it’s someone else’s problem. I have seen agencies move mountains to do things that my current agency flat-out refuses to do as a matter of course. I have also seen even individual workers within this current agency go out of their way to help people. They are often punished for their efforts But they know it is right so they do it.
All of us can take a lesson from Vasili Arkhipov.
All of us.
None of us is exempt from the good we are capable of doing. Nor the evil we can allow and excuse if we decide to turn the other way.
A smaller example:
Before seatbelt laws, my mom was part of a preschool committee for my brother. The committee ran by consensus. Meaning instead of a majority vote, everyone had to agree to something. There can be huge problems with consensus, but this is how it was run.
They were trying to make a decision about whether to make the kids were seatbelts on field trips. Everyone in the room decided not to make them wear seatbelts.
My mother stood up. She had worked on ambulances. She described the imprint of a baby’s head on a windshield in graphic detail.
Everyone changed their minds. The kids got seatbelts. Lives may have been saved. I grew up hearing that story, being told to always be that person if my conscience is yelling at me hard enough about something. I can’t say I always manage, but I can say I try.
Next time your conscience is screaming at you, listen to it. Listen hard. Then do whatever you can.
Today I Found Out has a good summary of Vasili Arkhipov’s role in saving the world, if you’re interested.
And remember you don’t have to be a commander of a submarine fleet or anyone special at all to stand up for what you believe in. And whether you save the world or not, you’ll still have an impact. And you’ll be able to live with yourself a lot more if your conscience is clear. J.K. Rowling emphasized in her Harry Potter series that there’s a choice between doing what’s right and doing what’s easy. What Vasili Arkhipov did should be a wake-up call for all of us.
So here’s my challenge to everyone: Be Vasili Arkhipov for someone, sometime, and keep trying. You may never know what good you’ve done. This isn’t about feeling good about yourself, it’s not about recognition, it’s not about staying out of danger. It’s about doing your best to follow what you know in your bones to be the right thing, no matter what.
tl;dr: Listen to your conscience even — especially — when everything and everyone around you seems to be saying not to. You may never know the good you’ll do by doing so. You may never know the evil you might allow to happen if you don’t.
It was pretty offensive. I mean what was said, sometimes, outside of earshot of clients, was just appalling. I mean the manager of my building was referring to them as “retard” — “retard” I think was one of the terms he would use, they had other words, but they were derogatory words.
Of course what’s written up, and everything that’s said in public, and if you’d have gotten some promotional material from the ARC…
It’s dressed up about how, things about “client independence” and “self-determination,” all this wonderful stuff. And “achieving potential”, and all that wonderful crap. While it’s not actually going on. Also you can’t forget “caring” for people. Actually if what happened bore any resemblance whatsoever to printed material, both internally and externally, the material we were trained on, the written material we received during training, and the material handed out to parents generally on the outside who were considering placing their children in these kind of situations — adult children I might add. The literature. If anything that was being written is true, those would’ve been wonderful places. But none of it was true. I mean I was very often informed that “This is the way it’s written, but this is the way it’s actually done.” This is what’s written, this is what’s actually done. They would read off policies to us and the same person practically in the next breath would violate them. But we had to know what the official policies were, the official line.
Those institutions will grab onto whatever the current fad is, claim it for themselves, and twist it beyond all recognition. Name the trend, they will adopt the language and twist it beyond all recognition. I’ve oftentimes observed that the real difference between the supervised apartments that I worked in and any of the state hospitals I was in, was basically a coat of paint on the wall. You know, you change the color of the paint, paint it nice, and plunk a different picture on the wall or something, and hey, it’s a “supervised apartment” setting.
They put a coat of paint on the wall, and bang, it’s supposed to be different now. And they change the words, so as to match what everyone wants them to be, and then they go ahead and do what they’ve always been doing. One of the reasons I really hate it when organizations change names and labels and stuff like that. Because you can’t change anything by changing the name except maybe the stationery. Why not call it what it’s always been called? Don’t play games with names.
I don’t think the word self-determination should be used by absolutely anybody who is not themselves developmentally disabled, or otherwise disabled. That term should not be used by their caregivers. Ever. Because the caregivers do not have a right to it. Or so-called caregivers or whatever you want to call that. It’s debatable as to what’s provided is comparable to the word care, in the usual definition of the word.
I mean one of the things that I very vividly remember, to give you an example of some of what went on there: One of the guys there had a girlfriend who was also in some kind of group home setting. And they decided they wanted to get married. The official policy that we all learned was that these people are free to do what they want to, that it’s their choice, but the person at the head of the house just basically said, “No, he can’t go visit her anymore. No, they will not get married. Period.” Although she theoretically had no right to do so, and basically her argument was that this would just be too much work for us.
Which is typical of what goes on, the official, wonderful label versus the actual reality. They’re not the same. Ultimately those organizations are run for the convenience of the staff. And that’s exactly what you’ll get when all power lies with the staff.
-Laura Tisoncik, 2004 interview
In the above interview, Laura Tisoncik is discussing her work in the developmental disability system as front-line staff. She herself has a developmental disability, but in this context she was staff, so she was able to see what staff said when they thought none of us could hear them.
I’ve often been in a position to hear how staff talk about us as well, for different reasons. Sometimes people don’t believe I can understand what they’re saying. So I get to hear some shockingly frank discussions of me and other people with developmental disabilities sometimes.
Also, just so you know, retard is not a word you should ever be using. It’s like a knife wound to the gut for most of us. I’m using it because I want to highlight what an ugly word is being used, a word that means you are not even fully human to any of us it is applied to. (And it is applied at one time or another to all people with developmental disabilities regardless of diagnosis. It comes out of an old term for intellectual disability, but when people say it to us and about us, they don’t restrict it to people with ID.) But in general it’s not a word you should use. It’s a word that says, “You are something less than a thing, something disgusting, something that shouldn’t exist, something that isn’t right.” The damage it causes is considerable.
Yet even when they’re not saying it, they’re often thinking it. And we can usually tell. You don’t have to hear the word to feel its impact, if it has ever been applied to you in any serious way.
At any rate, this gets back to the snake words somewhat, in what Laura is saying about brochures.
But it also gets back to other things.
Which is that there’s a public face and a private face of how the developmental disability system sees us.
And the public face is that beautiful utopia promised in the brochures.
And the private face can be a hellish dystopia with the word retard around every corner, embedded in every action even when it is not spoken aloud.
People who work in the system get visibly nervous when they find out that some of my advocates and cognitive interpreters have worked in the system.
Because that means they know that my advocates won’t buy their bullshit.
A lot of people do buy their bullshit.
We are pressured into at least acting or feeling like we buy their bullshit.
Sometimes it really feels like everything should be wonderful. But there’s always this feeling deep down in your gut telling you something has gone horribly wrong.
If you’re lucky, you’ll know there’s something wrong outside of you.
If you’re unlucky, you’ll decide there’s something wrong inside of you that you are not happy despite the utopia you are placed in. And then you will squeeze yourself into tinier and tinier containers, trying to get out of the way of the system that is crushing you alive.
Meanwhile you have to fight for the system and say the system is great, because hey you’re not in an actual institution, you have your own home, you have things that are more than you ever expected you could have. And if you say too many bad things, the VOR and their ilk will come along and use it to justify traditional institutions.
It’s really confusing.
But it’s enough to say, what they really think about us, and what they say they think about us, are two entirely different things most of the time. Unfortunately, most of the world believes their public face. They don’t see the nightmares many of us are living. They don’t say what is said and thought and acted upon behind closed doors.
In the developmental disability system, you can basically be sentenced and convicted of crimes, and they don’t even pretend due process is a thing. Some of the crimes are actual crimes, some are not. But they can write them in your permanent file on the strength of gossip alone. And then they can decide what to do to you for it. There is no trial. They don’t even pretend. Their word about you and about what to be done about you is law.
I once got pissed at a lady who was running a self-advocacy group. She was technically not running it, she was facilitating it. But many nondisabled facilitators run the self-advocacy group and tell people with developmental disabilities what we should be doing. They control us. And that’s what i saw her doing, and that’s what pissed me off.
If you want to know more about the way facilitators can control us in self-advocacy groups, read Dave Hingsburger’s article “Cutting the Strings: Suggestions for Self-Advocacy Groups”. It is available in this PDF link from the Green Mountain Self-Advocates 2010 Handbook. It starts on page 120.
Anyway, I saw her doing this. I got pissed. We got in an argument. My staff person was there with me the whole time.
I found out the next day that there were Things written in my file.
Thing #1: AWOL
Thing #2: Hitting the facilitator hard in the upper arm.
Thing #3: Trespassing
What actually happened was that I got pissed and walked out of the room. I came close to her but did not hit her or make a move to hit her. (There were witnessses, too.) Because of the way movement works for me, my legs carried me all the way across a street until I bumped into someone’s fence in that driveway.
I didn’t actually hit her.
AWOL, Absent WithOut Leave, is a weird term to apply to an adult. I was unaware I needed leave to walk out of a room for any reason whatsoever.
And in the state of California, walking up someone’s driveway and bumping into their fence is not trespassing.
My staff person, who was there the whole time, defended me to the Regional Center and said none of these things had happened.
My staff person was labeled ‘renegade staff’.
They can write anything about you. And what they write can change what kind of manipulation and behavior programs you’re subject to, as well as take you out of your own home and put you in a group home or other institution.
So if someone doesn’t like you challenging their power, they have the ability to throw that power around by accusing you of crimes. They don’t have to prove you did anything.
Office gossip about clients can also end up in our files, permanently. We are not always told what is in our files.
But bottom line, in the DD system, you can be charged, convicted, and sentenced for real or imaginary crimes. Without a trial. Without even being told.
You think I don’t see what you are doing. You think what you are doing is okay or even good. Sometimes you don’t even notice what you are doing. But you are doing it. And I see you.
Understand that, if nothing else: I know what you are doing to me. I feel what you are doing to me. I may not be able to put into words exactly what you do or how you do it. I might not be able to resist the ways you are changing me. I might not be able to stop you. But I see you, I know what you are doing, I am awake and you can’t put me back to sleep. And now, finally, I am able to tell you and the rest of the world what you’re doing and why it’s hurting people.
First, though, who I’m talking to and why. Because it is important to understand what I am and am not saying, and to which people And who I am and why I’m writing this. Every thread woven into this fabric is important. Leaving out any will only confuse things. I’ll start with myself.
First I’m a human being. I don’t want to go into too much detail, so this is the information that seems important. I am 37 years old. I have been a client of the developmental disability system for my whole adult life. I’ve spent all my life fighting to be a human being in a world that sees people like me as something closer to things than people. Words have never been easy for me, but I’ve struggled to achieve the ability to see things nobody talks about and then describe them in language. I have achieved a lot in that area, but it’s come at the cost of other communication abilities. Hence I can sometimes write eloquently about complicated topics, yet not be able to tell you something supposedly simple, even if it’s important. And each topic can take years to learn the words for: Please remember I’ve spent 37 years with no ability to describe today’s topic, and only a day and a half able to tell you what I can see.
So that is all you need to know about me right now. So I’ll tell you a little about you. Because my intentions are different towards different people as I write this.
Some of you are nothing but cold-blooded manipulators. You know already what you do and don’t care. I will tell you this: I see you. And most people in my situation are perfectly aware of you. My goal is to show the rest of the world what you do, so that you will be less able to do these things.
Some people are not sadistic or are convinced, one way or another, that what they do is okay, or at least harmless, or at least they mean well. Their behavior is not okay. To you, I want to say I see you too. I do care that some of you mean well or don’t fully understand the harm you do. But the harm remains, anyway. The more you hide from the reality of what you do, the more you’ll keep doing it. And people like me bear the brunt of the harm. So you need to stop a denial that might protect yourself but doesn’t protect us. And you need to stop finding ways to justify your actions to yourself.
Some of you, like me, experience this manipulation firsthand. If you’ve never known what was happening, I’m sorry to be the bearer of bad news. If you’ve already noticed, then I’ll say you’re not alone.
But I have a broader message to everyone.
We see what you’re doing. We know what you’re doing. We feel what you’re doing. We understand what you’re doing.
You manipulate us by restricting our choices. You make it easy to do what you want us to do. You make it more difficult to do what you don’t want us to do.
Imagine our possibilities as an open field where we can walk in any direction. You put walls in the field so that we can’t walk in the directions you don’t want us to walk in. You then put doors in areas you might want us to walk in. Then you hold open the doors.
So you stop us from doing what you don’t want to do. And then you make it easy to say, “Here’s the only direction you can go.” Even though the only people restricting which way we can go is y’all in the first place.
The walls can take the form of discouragement or threats. They can also just take the form of making it harder to do things in those directions, in ways that can be very subtle.
Let’s say you want me to engage in some independence theater with you. So you want me to bend down and put cat food in the cat food bowl.
So any time I ask for help or mention the cat is hungry, you basically ignore me. You may pretend I didn’t say anything. You may try to make yourself look so busy that you couldn’t possibly crack open a can of cat food and spoon it into a food bowl for 30 seconds. You may talk about all the things you have to be doing right then. You might say “I’m not doing that for you.” You might keep doing what you’re doing, pointedly ignoring what I said.
That’s the walls.
Then the door is that you will try to make it easier for me to just do the cat food than to ask for help. You might ‘redirect’ me towards doing it independently by telling me out loud that I can or should do it. You might tell me exactly where the cat food and other supplies are. You might even get the supplies out and give them to me or put them near me physically. All of these things are opening doors towards me doing it myself.
That is just one example.
It doesn’t have to be independence theater.
You can do this with literally anything you want us to do: Actions you want us to take and not take. Thoughts and feelings you want us to have and not have. All you have to do is make it hard for us to do anything but what you want us to do, and then make it easier for us to do the thing you want us to do.
You have no problem with this, usually, because you think you know better about our lives and choices than we do. You think you know what’s best for us. The only issue is move us in that direction. So you do. And if you are skillful enough, you can maneuver us into doing what you want without ever saying exactly what it is you want out of us.
But we see you. Oh, we see you. We see what you are doing. And that is why I am writing about this.
I owe more than half of this blog post to the Unity software on an Accent 800 by Prentke Romich. I started writing it a long time ago and finished it today as part of my series on what the developmental disability service system can be like.