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

Best hashtag ever: #GetYourBellyOut

#GetYourBellyOut is the best hashtag ever,

I’d better backtrack.

I had an ISA meeting.  That’s Individual Support Agreement.  At the last second, they brought a Surprise Administrator.  That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers.  Surprise Administrator (SA for short) was someone who works in the Howard Center administration.  Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m

The ISA is Vermont’s version of a person-centered plan.  It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan.  The meeting was certainly not very person-centered.  It degenerated into a shouting match mostly.  And a lot of it was the Surprise Administrator telling me that I was off-topic.  At my own ISA meeting.  When attempting to explain my ISA goals.  Which were “off-topic” because they didn’t like

So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.

This moment of comic relief came at an unexpected time.

I had defined my first goal as survival.

I meant it.

I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.

So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:

Surprise Administrator: Survival isn’t a goal.
Laura: Yeah it is!
Surprise Administrator: It’s a vague goal.
Laura: What’s vague about it? If her heart keeps beating…
Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff.
Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag)
Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!

After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident.  Especially given how sleep-deprived I was at the time.

So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.

It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.

The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.

It was started by a guy with a colostomy.  The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc.  It’s mostly about colostomies but can apply to anyone with similar things.  My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals.  Which could be months.

So this is the picture I posted to #GetYourBellyOut:                                               

#GetYourBellyOut

Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.

I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.

Anyway here’s a Get Your Belly Out website for Crohn’s and Ulcerative Colitis.  I don’t have either of those things, but I love their website picture, which is a bunch of bare bellies with stomas and ostomy bags! 

STOMA BELLIES!

I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…

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Posted in Developmental disability, disability rights, Self-advocacy

I’ll take the ‘dirty’ dick jokes rather than the ‘clean’ r-word jokes, thanks.

I watch a lot of standup.  I watch good standup, bad standup, everything in between.  I just watch standup whether I like it or not.

And I vastly, vastly prefer the comedy that allows for dick jokes and other things that aren’t considered ‘clean’.

Obligatory hot dogs…

Because it’s less likely to seriously offend me.

Because people with intellectual and developmental disabilities are acceptable targets of ‘clean’ comedy.  So when they get rid of all the dick jokes and all the stuff that’s socially unacceptable and ‘dirty’, they’re left with acceptable targets.

Which includes me.

And no, hating r-word jokes is not the same as censorship or not being able to laugh at myself.  I laugh at myself, and at disability, all the time, to the point it makes a lot of nondisabled people really uncomfortable.

The issue is that most r-word jokes are hate.

They’re not meant in good fun.

They say “You’re not a human being.”

It doesn’t matter if you cloak that message in humor, it’s never okay.

The primary targets of the r-word are people with intellectual disabilities.  But it has a broader range than that — it’s aimed in general at a group of people who are harder to define.  Anyone who can be easily mistaken for someone with an intellectual disability, certainly.  And anyone who’s been, in the imaginations of most people, sort of lumped together as this blob of people who aren’t really human beings.  That includes most people with developmental disabilities, some people with cognitive disabilities, and, as I said, it’s a group whose borders are fuzzy and indistinct.  But we’re all lumped together under the r-word in the imaginations of the people who use it.  It’s not a diagnosis, it’s a slur.

And I don’t use the word slur lightly.

To me, for a word to be a slur, it has to be a word that contains within it the notion that the people targeted by it are not really people or human at all.

It can’t just be an insult that’s often thrown at a particular group of people.  It has to be more than that.

The r-word is probably the slur I have absolutely the least tolerance for.

People have been calling me the r-word since I was a child.

My voice sometimes has ‘that tone’ in it that people associate with the r-word.  A sort of ‘dullness’.  People imitating my voice have always taken advantage of that.  And they imitate my posture and mannerisms as well.

By the way it’s very fucked up to have a common mannerism associated with people like you, be the actual American Sign Language word for the r-word.

But you don’t need to speak ASL to use our mannerisms and tone of voice against us.

And yes — people used the r-word on me even when I was technically classified as gifted.  In fact, they told me “Gifted is just what they call [r-words] to convince them they’re doing well in school when they’re really going to special classes.”  I’m not the only person I know with developmental disabilities who was told this growing up.

I was also told I looked like a [r-word] as a way to get me to behave more normally.  It didn’t work.  I never had any idea what they were talking about.  (I also got called “blind” and “psychotic” in similar circumstances.  There was always a tone of complete disgust, like I was a dog who’d just shat on the table at a fancy dinner party or something.)

At any rate, r-word jokes aren’t funny.  At least, not the ones I’m talking about.

And the fact that they’re considered perfectly acceptable for ‘clean’ comedy to the point they seem more common there than in the ‘dirty jokes’ kind, says a lot too much about the society we live in.

R-word jokes are an expression of hate, not an expression of humor.  It’s not just the word, it’s the way it’s used.  It’s the acceptance that those of us targeted are not human beings.  It’s the knowledge that every time someone accepts this kind of hate into their mind, people like me are at more risk of bullying, abuse, hate crimes.  And that most people don’t even register it as hate.  Even though it’s some of the most horrible and dangerous hate I’ve ever seen.

Sacha Baron-Cohen says, “I am exposing.  I am airing prejudice.”  The only problem is that the people [who] are laughing, are not laughing at the prejudice.  They’re applauding the prejudice!  When the joke is “Throw the Jews down the well, kill the Jews” it’s not funny.  But even if it was funny, they’re applauding it.  

Abraham Foxman, “The Last Laugh”

I agree with a lot of the people on “The Last Laugh”.  It’s a documentary about where the line is between acceptable and unacceptable topics for humor.  I don’t think there’s unacceptable topics for humor, but I do think there’s more and less acceptable ways to handle them.  And a lot of it depends on who is saying the joke, how they are saying it, and what they are saying. 

And when I talk about r-word jokes, I’m talking about people without any of the disabilities covered by the r-word making jokes at our expense.  Telling a joke that has real-world consequences and hiding behind “It’s just a joke” is both cowardly and dishonest.  And I feel like there’s a tradition among comedians to hide an immature impulse to do whatever you’re told not to do, behind some kind of pretense of moral nobility.

Give me a good dick joke any day.  Seriously.  Sex can be funny.  Hate isn’t.  At least, expressing hate is not funny.  Tell some good jokes about asshole comedians who think hating people with I/DD is ‘clean’, though, and I might laugh.

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, Developmental disability service system, disability rights, HCBS, Self-advocacy

Disability Integration Act graphics that agencies could stand to take a look at too…

This is a series of graphics promoting the Disability Integration Act, an important piece of legislation in the United States right now, that is not getting anywhere near enough support.  From the Disability Integration Act website:

The Disability Integration Act (DIA) is civil rights legislation, introduced by Senator Schumer in the Senate and Representative Sensenbrenner in the House, to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.910, H.R.2472) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.

Credit for most of these goes to Cal Montgomery.  His dogs Murdo and Erastus are featured too.  Image descriptions are in the alt and description tags, the captions contain my personal responses to each graphic.

Picture: A brown tabby cat sitting on a chair. Yellow background, purple text. Words: Hi. I'm Abby. In my house, I can eat, drink, poop, play, and clean myself whenever I want. Humans want the same things. www.disabilityintegrationact.org
This is my personal favorite, and is the reason that my own home is not the same as moving into someone else’s home, no matter how much my agency wants to convince me that moving won’t harm me and forcing me to move isn’t massively unethical.

Picture of a small brown house rabbit on the floor with some vegetables and a toy. Olive green ackground, black text. Text says: Hi. I'm Lily. I spent the first year of my life in a cage. It made me lonely and angry. I'm much happier now that I live somewhere I'm allowed to be free. Humans feel the same. www.disabilityintegrationact.org
Not everyone knows rabbits don’t belong in cages, look up the House Rabbit Society if you want more information on that. Not everyone knows human beings don’t belong in institutions no matter what our disability is. Look up the Disability Integration Act for more information on that.

Picture of a brown tabby cat with white tuxedo markings. Purple background, blue text. Text: Hi. I'm Gallifrey. Listen... Cats don't belong in shelters, and humans don't belong in institutions. www.disabilityintegrationact.org
Pretty straightforward…

Picture of a brown and black puppy greeting a new smiling human by licking him on the nose. Grey background, pink text. Text: Hi. I'm Erastus. The day I got to my new home was a good day. Tens of thousands of people with disabilities are waiting for the services to start new lives in my state alone. You can help. www.disabilityintegrationact.org
This is horrifying but true. This is what I mean by forcing us not to live in our own homes is an ongoing, large-scale crime against humanity. I’m not making this up.

Dog lying on his back on the grass. Purple background, yellow text. Text: Hi. I'm Ersatus. I love my freedom. Disabled people love freedom too. www.disabilityintegrationact.org
It’s amazing how many people don’t grasp this, or seem to think that disabled people ought to be okay with giving up freedoms other people would strenuously object to giving up. They act like it’s the natural order of things. There are entire groups of people who think it’s their job to persuade us to be happy giving up our freedoms. Who think that there’s something wrong or pathological or that we’re in denial about our disability or something, if we still want freedom. That we’re just being stubborn or otherwise causing problems, instead of naturally wanting what everyone else in our cultures gets. It’s like freedom for us is optional and it’s our job to “accept” that. Bullshit.

Picture of an elderly black and brown dog who is very cute. Yellow background, blue text. Text: Hi: I'm Murdo. I have lived with my human for 11 years. As I age, I want to keep living where I feel loved & comfortable. Humans feel the ame way. www.disabilityintegrationact.org
This is a close second in terms of favorites.  People act like when people get older, they should be okay giving up their freedoms as well. This is just as much bullshit as it is when applied to disabled people. There is nothing about being old that means you have to leave your home. Nothing at all. No more than being disabled. This goes whether you acquire a disability or not as you age. Elderly people should not be forced out of their homes any more than disabled people should, nor forced to accept loss of freedom as the price of aging any more than it is the price of disability. The wholesale warehousing of elderly people is part of the same large-scale crime against humanity as the warehousing of disabled people, and is often done by the same industries.

What I like about these is they show how simple and normal it is, what disabled people want.  And they have adorable animals on them, and draw parallels with the actual lives of the animals, and people care about animals.  They might see things about disabled people they wouldn’t otherwise see without the analogies being made.  For real.

But seriously my favorite is the one about being able to poop whenever I want.  That one really encapsulates why it’s important that I stay in my own home, and why making me move to someone else’s home is unreasonable, cruel, criminal, and a whole host of other choice words.

And yet disabled people and elderly people are expected to not only accept restrictions on our freedom, but to do so gracefully and without complaint.  In fact, the more readily we accept these things, the more we are praised.  And then we lose our freedom.

And usually we die faster too.  Not that anyone notices.  They think we die because we’re elderly or disabled.  Actually, lifespans (along with various other measures of physical and mental ability) for various disabilities have had to actually be updated over the years entirely because of fewer of us living in institutions.  Institutions kill people faster.  All institutions, whether large state institutions or small nursing homes.  They reduce our lifespan and nobody notices or cares.  That’s not the only reason they’re bad, but it gives the lie to the idea that they’re really there to “protect our safety”.

There is nothing that happens that is good in an institution that can’t be done, and done better, outside of one.

There is a lot that happens in institutions that is bad and doesn’t need to happen at all.

There is nothing that happens in institutions that is special to institutions, good, and requires an institution in order for it to happen.  Anything you hear different is a lie used to keep institutions open.

Institutions are our modern equivalent of Victorian workhouses.

Workhouses were institutions for poor people.  Think the sort of thing Charles Dickens wrote about.  They had terrible living conditions and people died in them.  Many poor people would rather die than go to the workhouse, just as many disabled people would rather die, live on the streets, or go to jail than end up in an institution.  People considered workhouses necessary.  People considered workhouses natural.  They were neither one.  These days, people consider workhouses an atrocity and a thing of the past.

But we still have institutions for disabled people, and they are everywhere.  Some of them are large and obvious, others are hidden in plain sight.  But all contain the same thing:  A power structure that puts administrators on top, direct support staff in the middle, and disabled people at the bottom.  If you want to know how institutional something is, follow self-advocacy leader Roland Johnson’s advice and ask the question “Who’s in charge?”

Also, anything that requires a disabled person to move out of our own home — even if it’s “just” moving into the home of an existing staff person — and gives no option for the disabled person to get the same help in the home we already live in, shows that something is institutional in nature.  Even if it’s entirely “community-based” otherwise.  Real community-based services let you live wherever you want to live.

And there are institutional-style services that masquerade as community-based services and get funding through home and community-based services (HCBS) waivers.  Even some that let you stay in your own home.  If living in a system seems more like a dystopia than it ought to, chances are thre are at least institutional elements.  It’s plenty possible to have an institution where each person lives in their own home but it’s otherwise run like any other institution.

At any rate, all of this is very important, and I love these graphics.  And definitely tell people about the Disability Integration Act and give them the link to the Disability Integration Act website.  Which is http://www.disabilityintegrationact.org/

 

 

 

 

 

 

Posted in Being human, joy, medical

The joy of J-tube feeding.

Picture of Harriet McBryde Johnson, next to the quote, "We need to confront the life-killing stereotype that says we're all about suffering. We need to bear witness to our pleasures."
Picture of Harriet McBryde Johnson, next to the quote, “We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.”

For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.

But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.

I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.

But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that may seem a bit odd.

Harriet McBryde Johnson, Too Late To Die Young,

This one may take some explaining.

So I’m fed through a J-tube, short for jejunostomy tube.  That means a tube that delivers food directly to my small intestine.  This bypasses my stomach, which is partially paralyzed and may as well be a dead end where food is concerned.

So I don’t taste food, and I don’t feel the sensations of food in my stomach.  Instead, liquefied food goes into my intestines through a feeding pump, very slowly.  It has to go slowly because while your stomach can expand to take a whole meal, your intestines can’t.  So you have to drip it in slowly, usually over a period of hours.  Some people have to do it 24 hours for a full feeding, while other people can go faster.  I used to do 24-hour feedings, but now I do 8 hours or less depending on how I’m feeling.

I get two kinds of food.  One is a formula called Osmolite.  The other is homemade vegetable soups.  I cook the vegetables and put them in a high-tech blender that can liquefy anything.  Then I strain them through a chinois so they can’t possibly clog the tube.  The vegetables provide nutrients that the Osmolite does not, and help prevent c diff, which I got when I stopped eating vegetables this way.  For more information on the risks of c diff in people who are tube-fed formula without vegetables, you can read the paper Tube feeding, the microbiota, and clostridium difficile infection by Stephen JD O’Keefe from the World Journal of Gastroenterology.  Bottom line: The vegetables don’t just make me feel good, they also feed all my little symbiotes that help prevent c diff.

Mel eating by J-tube from a full feeding bag of asparagus and split pea soup.
Mel eating by J-tube from a full feeding bag of asparagus and split pea soup.

So here’s the joy part:

I think most people experience this feeling, but they never get to experience it alone, so they probably don’t notice it.  Most people’s experience of food is wrapped up in sensations of the mouth and stomach.  Taste, texture, smell, fullness.  I don’t get any of that.  Which means I get to isolate a joyful and amazing feeling that most people never get to experience on its own.

There is a feeling when you are digesting a food that is truly good for you.  I get it from digesting vegetables most of all.  Here, I am eating asparagus and split pea soup.  The feeling is one of intense satisfaction, of rightness, of a subtle but inescapable pleasure that covers your entire body.

And once I am digesting this food, I get to feel that way without anything distracting me.  No taste, no texture, no sense of fullness.  Just the joy of digesting something my body very much needs.

I don’t think people who are fed by anything other than J-tube ever get to experience this feeling on its own.  It’s an amazing feeling.  I bet that if you ignored other sensations, you might find it underneath everything.  But it’s a unique experience to feel it on its own.  And that comes directly from being disabled and needing to bypass all the usual routes of food to your body.

Osmolite makes me feel like crap by the way.  I’m thinking of going rogue and designing my own diet.  But that would take a lot of work, so I’m not doing that right away.  (I have other reasons too, like my high diabetes risk and the lack of formulas that address that until you already have diabetes, which I’m trying to avoid.  It would be easier to design a diet similar to pre-diabetic diets, with specific attention to stuff that feeds your friendly symbiotes as well.  There’s a lot of foods that overlap there, like resistant starches.)

People think that tube-feeding, especially J-tube feeding where you don’t even get to feel a full stomach, takes all the joy out of eating.  But I have learned that when I digest foods that are good for me, I feel an intense kind of joy that I’m not sure most people ever get to feel as directly as I do.

And that’s what Harriet was talking about, these pleasures that are specific to being disabled.  Not joy in spite of disability but joy because of disability.  They are very real.  And in a world that sees disability as nothing but tragedy and suffering and a fate worse than death, they matter a lot.  Especially to people with feeding tubes and other things people are sometimes so terrified of they’d rather die.  I love life, I love my feeding tube, and I love the unique joy of eating delicious vegetables through a J-tube without the distractions of my mouth and stomach.

 

Posted in Being human, Developmental disability

Taking care of my hair isn’t as vain or trivial as it could seem.

Growing up, I had a weird relationship with my hair.  I wanted to wear it long, and never cut it unless forced.  But I was taught that the price of this was having my hair brushed in a manner that came close to hair torture.

Brushes stuck in my hair no matter how much detangling spray you stuck in.  My mother did not know how to cope with hair like mine, and did not seem to use any techniques to soften what she was doing to my hair.  She’d just run a brush through it no matter what happened.

Every time the brush went through she hit a huge tangle.  Brushes got stuck.  Brushes sometimes broke.  She was determined to brush and blow-dry my hair into submission.  The best she could get was a straight or wavy outer surface with a bushy rat’s nest underneath.  The rat’s nest seemed to form of its own accord and spread throughout my hair with lightning speed.  Then it would be back to the brush torture.

I screamed.  I cried.  I got in trouble.

“Be quiet, someone will think I’m hurting you!”

“But you are!”

Obviously, that didn’t go over well.

Very occasionally she’d take me to a hairdresser.  I never screamed at the hairdresser.  My mom found this puzzling.  It was because the hairdresser was paid to remember the hair was attached to the head of a human child, and acted accordingly to prevent pain.  But the hairdresser really didn’t know what else to do other than blow-dry it within an inch of its life either.

When you’re in the system, you actually get judged on the state of your hair.

I have actual files that solemnly describe my hair as ‘unkempt’ as if that’s an actual symptom of anything.  I’ve talked to others who have the same thing in their files.  It can even hurt your chances of being taken seriously in an emergency room for a physical problem.

So my hair has actually been described as pathological in a psychiatric context.  My hair.

Anyway, I went a long time shaving my head or keeping my hair very short.

But at some point I wanted to grow it out and was looking at ways to do so.

I found out the secret nobody knew or told me:  Most of my hair is curly.  When properly moisturized and taken care of, it forms ringlets.

Brushing curly hair breaks up the natural curl pattern and makes it bushy and tangled.

I used to think my hair needed so much care there was no way I could take care of it.

It turns out caring for my hair is very simple.

I fill a spray bottle with water and pour in a small amount of oils that penetrate or lock in moisture to your hair.

I shake it up and spray it on my hair a few times a day.

I finger comb.

Then depending on humidity and other factors I get waves and ringlets.

curlyhair
My curly hair more or less as it’s supposed to look.

And virtually no tangles.

It’s that simple.

Hell, in that picture I’d, in a pinch, used a hand lotion with shea butter, olive oil, and coconut oil while my hair was still wet.  It turned out perfect.

For my mom’s part, she’s caught on about the curliness by now and sends me amazing hair oils from time to time.

This, by the way, is what can happen without taking care of it:

Humid hair Photo on 7-5-17 at 7.45 AM
Mel’s hair trying to defy gravity in last summer’s humidity.

Knowing how my hair is supposed to work is part of knowing how my body is supposed to work.  Knowing how my body is supposed to work is something that’s taken away from a lot of disabled people, including me.  I have a congenital neuromuscular condition and nobody’s ever taught me how to live within my own body with this.  I learned to plow through until I drop.  Well nobody’s ever taught me how to take care of my hair, either.  Or even that there was a way to take care of my hair that didn’t involve hair torture.

As a person with a developmental disability, gender expectations are complicated.  In many ways I’m expected to be genderless.  Not genderless as in the word I use to refer to my lack of any gender identity.  No, it’s different than that.  When people say people with developmental disabilites are asexual, they don’t mean the sexual orientation.  When they think we’re genderless, they’re not talking about a lack of gender identity.  What they’re thinking about in each case is that we’re missing something they consider fundamental to being a full human being.  To them, I’m an it, a thing, not a person.

So the expectations I get from my appearance and manner already, get amplified by the fact that I have a developmental disability, and can become dangerous very quickly, including in medical settings.

The psychiatric system outright punishes gender non-conformity in any form.  For anyone presumed to be a girl or woman, that means unkempt hair is a sign of psychopathology.  But they offer no more tips on how to have kempt hair than my family or haidressers had growing up.

My unibrow has been carefully measured and noted by geneticists.  My facial hair is occasion for frequent hormonal testing.  I’ve had doctors pull down my pants with no warning in front of med students in order to remark on the Tanner stage of my pubic hair without saying a word to me.

Everything about every hair on my body has been made out to be a medical or moral problem at some point.  Many things about the hair on my body have been made into a gendered thing, sometimes combined with ableism, sometimes not.  Which for a genderless person is an extra level of aggravating.

Also, because I’m disabled — and fat — and other things — I’m not supposed to give a shit about how I look, because after all I’m just a thing.  And a gross thing at that.  Gross things aren’t supposed to care about our appearance at all.  I’m reminded of Dave Hingsburger’s post about being a disabled fat guy taking his shirt off in public.  Not quite the same, but related.  We’re not supposed to care about our bodies, let alone be okay with our bodies as we are.  It’s just not supposed to happen.

The way my hair grows on my body matters to me.

I am very attached to my unibrow.

my unibrow
My unibrow showing between the top of my glasses and the brim of my hat.

I am very attached to my facial hair.

chin hair
The scraggly dark hair that grows on my chin and upper lip.

And I am very attached to taking care of the hair that grows on top of my head, and seeing it as it’s meant to be all along.

greenstripeshirt
Mel with curly hair showing around the edges of hir hat.

And as trivial as those things sound.  With the amount of crap I’ve gotten all my life for all of those things.  Every single one of them means a great deal more to me than may make sense to most people.  Every single one of them is important.  Every single one of them I’ve had to fight for, sometimes literally, physically.  Every single one of them has been picked apart in terms of disability at some point in my life.  Every single one of them has been affected by how I’m perceived as a disabled person.  Keep in mind doctors once told my parents it didn’t matter (because I was disabled) whether I had teeth, so hair isn’t even on the agenda.

So yeah, I care about my hair.

But not for the reasons you’d think.

Posted in Developmental disability service system

Smiling teeth with fangs.

Black and white photo of woman sitting at a desk smiling insincerely.
A picture from an article in Mouth Magazine, of a Nice Lady Therapist with allllll her teeth bared in a terrifying smile.

I didn’t want to get into everything my last post on Nice Lady Therapists and their war on human emotion.  But I want to say that my (mostly working-class, mostly Okie, mostly disabled) family has clashed with Nice Lady Therapists since the moment we came into contact with them.  And I’ve been in contact with some part of the psychiatric and developmental disability systems (different amounts at different times) since the age of seven.

By which I mean, there’s this way that Nice Lady Therapists, acting together, determine that their idea of correct behavior is the only possible idea of correct behavior.

So I lived in a residential facility for part of my teens.  And they had… problems… with my manners.  All kinds of problems.  Inappropriate happiness.  Table manners.  They actually told me I was completely disgusting and that nobody wanted to be in a room with me.  It went on and on.

The thing was, nothing they were getting on my case for was out of the ordinary in my family.

And then they’d get on my family’s case too.

It never occurred to them — or maybe they just didn’t give a shit — that my family came from a different cultural and class background than they did.

They just decided we were wrong and did everything they could to shape my behavior into something more acceptable to themselves.

Mostly they failed.

And the conversations that happened when my parents were like “But our kid isn’t doing anything wrong, we do that stuff too!” were every kind of condescending.

They acted like they were teaching me social skills.

They were actually more like trying to teach me their cultural norms as if they were the only cultural norms.  Or the only good ones.

And mind you, I’m always up for learning about cultural differences and how to bridge them.  That’s valuable information.

But I’m never up for being told that I and my entire family are disgusting, mannerless people with no redeeming value to our social skills until we can behave like something we are not, can’t be, and never were.

See, I value a lot of things about my culture.

I value being an Okie.

I value the things passed down to me by generations of poor and working-class Okies.

It doesn’t mean I think my culture is the best or that there’s nothing messed up about it, or there’s nothing valuable about other cultures.

But holy crap people, there’s nothing wrong with who I am to begin with.  And it’s ages of being told there’s something wrong with me that made it so hard to accept that I’m an Okie.  And accepting I’m an Okie has helped me work from a place of strength instead of always trying to be something I’m not.

And this stuff just starts to look like snobbery.

But in the developmental disability system and similar systems, it’s snobbery with a lot of teeth behind it.

A lot of smiling teeth.

With fangs.


For more where the photo at the beginning of this post came from, read Joe Ehman’s classic Mouth Magazine article, My Contaminated Smile.

Posted in Developmental disability service system, Self-advocacy

My case managers have never heard of Olmstead.

Lois Curtis and Elaine Wilson
Lois Curtis (right) and Elaine Wilson (left), the Olmstead plaintiffs

Olmstead was the decision at the Supreme Court that has allowed so many Americans with developmental disabilities to live in our own homes of our choosing.  Two women with developmental disabilities, Lois Curtis and Elaine Wilson, sued for their right to leave an institution.

It is the basis for the system that provides me services.

You can read more about this decision at Olmstead: Community Integration For Everyone.  There is also a Wikipedia page about Olmstead.  There is also the Olmstead Rights Page.

This happened back in 1995-1999, guys.  Anyone who works in the system should be aware of it.

My case managers had never heard of it.

This at an agency that violates it regularly.

This is important and telling.

 

Posted in Developmental disability service system

Snake Words: Hiding the Dystopia

Lords and Ladies by Terry Pratchett

“Elves are wonderful. They provoke wonder.
Elves are marvellous. They cause marvels.
Elves are fant

astic. They create fantasies.Elves are glamorous. They project glamour.
Elves are enchanting. They weave enchantment.
Elves are terrific. They beget terror.
The thing about words is that meanings can twist just like a snake, and if you want to find snakes look for them behind words that have changed their meaning.
No one ever said elves are nice.
Elves are bad.”
― Terry PratchettLords and Ladies

(Apologies to actual snakes.  Snakes are cool.)

The DD service system loves to pretend that it is a utopia ushering us all into an age of inclusion and empowerment and lots of other nice words.  The problem is that for a lot of us, far from a utopia, it is a dystopian nightmare.

One way they protect the illusion that it’s all wonderful is by changing the meanings of words.  They have a talent for taking a word and turning it into its opposite.

They have a term, for example, dignity of risk.  What that term is supposed to mean, is that too often people with developmental disabilities are ‘protected’ from taking risks that other people are allowed to take.  We may be forcibly prevented from drinking alcohol, or having sex, in ways that other adults are not.  Dignity of risk is supposed to mean that we have the right to do things that agencies might consider risky or dangerous.

Here is an entire Wikipedia page on dignity of risk. 

But here’s how the system actually can use it:

Let’s say there’s something that you really need them to do.  The agency failing to do that thing will result in you being in danger.  You know this.  The agency has a duty to do this thing.  You want the agency to do this thing.

The agency does not want to do the thing.

So they set up an impossible set of hoops you have to jump through in order to do the thing.  When you can’t jump through the hoops, they tell you it is your own choice that the thing is not getting done.  If you really wanted it to get done, you would jump through the hoops.  The danger you now face as a result of their neglect will now be referred to as your choice and defended with the idea of dignity of risk.

So like the fact that until recently I hadn’t been bathed in a year or two?  Dignity of risk.  Except this is not a risk I chose.  It is a risk they chose for me.

See what I mean?  They can take a word, twist it inside-out, and turn it on its head.  Until they can justify taking away all your freedoms with language designed to protect your freedoms.

The DD service system is excellent at playing this particular word game.  It can be especially confusing if they use the right meaning of the word sometimes, but the wrong one most of the time.

Always, always look for the snakes behind the words.  Because they’re there. And in the DD system, they’re everywhere.  Every word or term that has an actual meaning that is supposed to protect our freedoms and rights as people with developmental disabilities, has an evil twin that looks exactly the same but exists to take away our freedoms and rights.

Look for the snake words.  Just look for the snake words.  If you understand how they work, they will give you a window into the dystopia a lot of us are living in.