Posted in Developmental disability service system, HCBS

Clichés & Platitudes & Control & Change

word cloud, largest words are want, control, and language.
Word cloud based on the “translation” chart by Dave Hingsburger further down this page.

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.”

No.

No.

No.

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
Hitting out I want control.
Spitting out food I want control.
Kicking the furniture I want control.
Swearing at staff I want control.
Face slapping 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.

Posted in Death & Mortality Series

Everyone’s death belongs to them alone: What octopuses and hospice can have in common…

A sculpture of a skull with an octopus sitting on it.
Death and octopuses, who knew there was a cool sculpture that combined them?

 

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

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:

Attitudes Towards Disability Prove Almost Lethal

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…

Power Tools by Dave Hingsburger
Power Tools by Dave Hingsburger

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.

First Contact: Charting Inner Space (Thoughts about establishing contact with people who have significant developmental disabilities) by Dave Hingsburger
First Contact by Dave Hingsburger

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.

Dangerous even.

“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?

The answer?

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.

Everyone’s death is their own.

 

Posted in Developmental disability service system, HCBS, Self-advocacy

The problem isn’t that we need institutions back. The problem is we haven’t got as far away from them as we think we have.

An interview of Noreen, a woman with a developmental disability, by Dave Hingsburger, about her time in institutions:

“Do you remember your first days there?”

“Not really.”

“Do you remember being happy, being frightened, being sad?”

“I think the first thing I felt was lonely.”

“That must have been hard.”

“No.”

“No?”

“No.”

“But it’s not a nice feeling, to be lonely.”

“No but that’s pretty much all I ever felt, from long before I went in there. So it was just the same really.” Pow! She moved from the community to the facility and it was the same. It is not a place. How do I describe the thoughts that poured inside me and all around me. Noreen stared at me as it was clear that something was happening inside me. I just knew, all of a sudden knew, that one of the errors we had made was assuming that HOME WAS A PLACE. And it isn’t, it isn’t at all. By focusing solely on community living, we focused on COMMUNITY and not LIVING. By focusing on community, we focused on the popular definition of community being a place that was outside a facility. A community is not a place. It is a sense. It is a feeling. It is belonging. It is having anchors. It is being wanted. It is being necessary. I thought that I was hearing about Noreen’s institutionalization as if it was the first time she was segregated. Noreen’s life was made different not by the fact that she was placed behind walls, but because she was of the type that people thought should be placed behind those walls. Noreen began her journey the first time she was turned down for adoption because of who she was. It means that we do not move a person from a place to a place as this ensures failure or even worse CONTINUANCE OF THE SAME THING; we need to move a person from a situation to a situation, an attitude to an attitude. I’ve made so many mistakes.

“Are you alright?”

“Yes, sorry Noreen, but I have so much to learn from you and sometimes the lessons are hard.”

“What did you just learn?”

“I don’t know if I can explain it.”

“Try.”

“Noreen, when you said that you felt lonely just like you always had, I think I realized that the problem isn’t where a person lives but how a person lives. I think I always just saw the institution as a bad place and the community as a good place. Just like the black hats and the white hats in the movies.”

“I know. We’re not supposed to think this, but sometimes people get mad at me because I say that you don’t just move people out of the institution but you move them to somewhere better.

[I Witness:  History and a Person with a Developmental Disability by Dave Hingsburger.]

When people find out the dystopian hell that exists for many of us underneath the utopian dream of community-based developmental disability services, a lot of them respond by saying we need to build institutions again.  Sometimes they think they can make the institutions better.  Sometimes they don’t bother with that (hello, VOR, nice to loathe you again).  They think there is something wonderful or protective about institutions that has been lost.  That is not true.  Anyone who uses my words to promote institutions is misusing my words, stealing them, twisting them.

The problem is not that we have moved too far away from what institutions are.

The problem is not that we just haven’t found the magic formula for the perfect institution yet but these new ones will be wonderful.

The problem is that in most of the service system we have barely moved away from what an institution is, at all.

An institution is not created by the shape of the building.  It’s created by who holds the power, and what kind of power they hold.

Many community-based service agencies for people with developmental disabilities work like this:

  • You take what a traditional institution was.
  • You take all the people out of it so that we’re all living in individual apartments or houses.
  • The same people at the top have all the same kinds of power.
  • The same people in middle and lower management have all the same kinds of power.
  • Staff are still staff with their combination of lack of power within the agency and total power over clients.
  • And because all of those things are the same, lots of things don’t change at all, or don’t change nearly enough.

I will fight to the death for my right to live in my own home.  For Medicaid.  For the HCBS waiver programs.  Not living in a traditional institution means the world to me.

But I will no longer pretend that my agency isn’t institutional in the way it uses power over people like me.

I will no longer pretend that I am not trying to scrabble together some kind of meaningful life living on the ragged side of a nightmare.

I will no longer pretend that what any of us roughly 670 adult HCBS waiver clients in my particular agency get is good enough for any of us.

Because if we all pretend these things, if we play along with the story we’re supposed to tell, more people will live this story.

And more people will die.

So no.  Don’t frigging build institutions because of what I say.

Change things so that they’re less institutional.  Not more.

And no you can’t build a magical institution that isn’t an institution because you waved your hands and cast a spell that called it an intentional community.  That’s glamour.  Or in other words bullshit.

A rock with a natural hole in it, held over a colorful crochet pattern.
Glamour, in folklore, is a spell cast to make something appear different than it is. Usually to make it appear better. Like making a bunch of rotting trash smell and taste like a tasty feast.  Folklore also says you can see the reality behind glamour by looking through a rock with a natural hole in it.  I have a lot of rocks with natural holes in them…

People with developmental disabilities have to live with the consequences of your bullshit.  That’ll be another post, or three.

But you can’t just change the surfaces of things and expect the insides to change.

You have to change the insides.

And while I will never deny the importance of what people have done.  The ability to live in my own apartment.  All these things that are meaningful to my survival.  The amount of people with developmental disabilities, and sometimes families, who have worked hard to get me the good parts of the life I have.

I also can’t deny that the way many agencies pull this off is more a surface change than a deep change.

And without a deep change, you won’t get anywhere near enough change.

So when I tell horror stories, don’t think “Institutions are better.”  Think “We haven’t moved anywhere far enough away from institutions yet.”  And keep moving away from institutions.  Because our lives depend on it.

And listen to any person with a developmental disability you hear, whether it’s Noreen or me or anyone else, who says our lives are not getting better or our lives are not getting better enough.  Because there’s a lot of pressure on us to play shiny happy brochure-ready client brimming over with wonderful changes, and if any one of us is saying otherwise, you want to listen carefully.