13 March, 2016

Why nursing homes are hellish places

I just found something I wrote last year and thought it was worth posting. Warning: it's very dark!

Nursing homes are hellish places. I can’t speak for every nursing home in the world. I worked in one for 8 months, have been in a few other ones (training, working with clients who lived in nursing homes, etc.), and have been a support worker in various other settings (some of these things are also true in those settings). I think there’s a system in place that causes residents of nursing homes to often be in hellish situations–treated roughly, severely physically neglected, and denied kindness, respect, and freedom at a time in their lives that is likely to be very confusing and painful.

The people who appear to be responsible for this are the staff who work directly with the residents–the aides and charge nurses (LVNs). And these are the easiest people to blame when something bad happens, like a resident getting injured or sick due to neglect. Not only does it seem to be the aide or LVN’s fault, but they’re often from marginalized groups–poor, women, immigrants, POC–so it’s easier for higher ups to project something negative on them. They weren’t empathetic, they’re not kind, they were too lazy to take care of their resident. Due to language or cultural barriers, the aide may not be able to present themselves in the best light or make the best impression. It also is easier to fire or punish this person than to change the system.

However, what’s actually happening is that they’re put in an impossible situation.

They’re paid very little, and aside from the obvious stresses and difficulties of being poor, they may be doing things like picking up extra shifts–so, like, working 24 hours in a row. They might be trying to raise kids, work another job, or be in school at the same time so they may not be sleeping much or at all. Obviously, all this stuff affects how functional someone is and how fast/well they can work.

But there’s the other thing which is that too much work is assigned. Like, when I worked at a nursing home, the minimum required ratio at night was 1 aide to 24 residents. (Often it was like thirtysomething residents–but since that wasn’t actually legal I won’t talk about that.)

So, let’s say 12 of these people aren’t continent and are supposed to be changed every 2 hours, let’s say changing & cleaning someone takes 10 minutes. (Which I’m absolutely sure someone who doesn’t know anything about it would say is SO much longer than it really takes! You should be able to do it in 5 minutes! But also it’s against the law to have diapers and wipes out and visible on a table in someone’s room, they should be away in a drawer. But you should be able to do it in 5 minutes even though you might have to change the person’s bed and clothes. Well…I’m saying 10 minutes. Sorry.)

Anyway, doing that job already takes 2 hours. But also there’s helping people who put on their call light asking for help getting to the bathroom, or for a glass of water or something. So let’s say 3 people do that, the water takes 5 minutes. One person goes to the bathroom and back in 5 minutes. The other person goes to the bathroom and sits there for a long time–you’re supposed to stay with this person because they are a fall risk. (You are responsible if you leave them alone and they fall.) So the whole trip takes 15 minutes. Now we’re at 2 hours and 25 minutes.

Also, someone is confused and is getting out of bed, walking up and down the hall, and walking into other people’s rooms and touching them, which is scaring those people. You realize this is going on, so you go and convince that person to go back to bed. This takes 10 minutes. (Also, the LVN finally comes on the hall–you haven’t seen her all night–and wants to drug the person to keep them from getting up, which I’m pretty sure is illegal, and is definitely a horrible thing to do. But maybe you can see where this kind of decision is coming from.)

We are now at 2 hours and 35 minutes for what was supposed to be 2 hours of work, and our hypothetical self is working without ever taking a break or going to the bathroom or anything. Also, I forgot that you’re supposed to be filling out this computerized chart of what everyone ate and if anyone went to the bathroom, and if so, how much, etc. I don’t really remember how long this takes overall, but let’s say that you do it for 20 minutes during this “2 hour period.” So we’re basically at 3 hours. You are working at a speed that isn’t realistic; you’re also probably exhausted because of your life circumstances that I mentioned earlier; and you are 1 hour behind in your work.

Oh, by the way, pain: getting the nurse (who is stressed & busy) and trying to get her to give a pain pill to someone who is screaming in pain. And, by the way, emotional pain, just kidding. Like, someone is terrified, or miserable. That person is crying. You’d like to go and talk to them and keep them company. Just kidding, it’s 3 people. You’d like to go talk to these people. But you can’t talk to any of them, you don’t have time. But you go talk to one of them.

Then, you hear an alarm going off, indicating that someone who’s a fall risk is walking around, but you’re pretty sure it’s someone who, while she’s technically a fall risk, is always getting up and walking around by herself, but she never falls. So you keep talking to this person who’s upset. The other person falls and is seriously injured. Also, you’re in a lot of trouble.

Basically, the actual circumstances of the job encourage you to not care about people at all–to do a half assed job with the physical act of taking care of people (not cleaning them very well when you change them; just throwing random clothes on them; not brushing their teeth; transferring people in a very fast brusque way that is physically uncomfortable for them), never mind their actual preferences (you’ll help them get to the bathroom when YOU can carve out the time to do that) or God forbid their FEELINGS (how could you possibly have time to just sit and talk with someone?). The job is SET UP LIKE THIS because the workload is not realistic. Meanwhile, the higher ups expect you to get all your work done, AND the things they officially ask of you are like, to be gentle and polite and respect people’s preferences.

So if the aide doesn’t get their work done or is short with people, the higher ups are like, oh they’re a bad aide. (To be clear, I obviously don’t understand why someone would speak cruelly to an old person they’re taking care of. I do understand neglect and roughness in this context–the former of which especially can be really dangerous.)

And the higher ups maybe aren’t evil. I’ve never been one. But when I was an aide, the nurse manager was this very soft spoken lady who seemed very sweet and caring (btw she also came off kind of upper class and seemed to find the working class aides rude and uncaring and stuff) but like…at best, she just didn’t get it! And I’m guessing that the further away you get from the actual situation, the less you get it. And those are the people who set the job up.

01 February, 2016

The Softer Side of Searing

The New Yorker has been kind enough to publish my letter, where I point out that Autistic kids don't have black mirrors for eyes. (Their version // my initial version.) I really appreciate them doing this because I hope it will make their readers consider the effects of dehumanizing language. I don't refer to my hurt feelings, but to the way people may behave after being exposed again and again to the idea that Autistic kids are bad tempered, bad to be around, and different to the point of being inhuman.

I also hope that the wording of my letter will remind people that autism is just one of the many disabilities that exist. I feel this is an important thing to remember, both for Autistic people's benefit and for the benefit of people with other disabilities.

When the New Yorker first edited my letter, I didn't like some of the changes they made. I worried that they would not publish my letter if I argued, but the Letters Editor was very nice and accommodated the 3 requests that I had.

However, I want to point something out. I summarized the black mirrors quote this way:

Shapin claims that Autistic children's eyes "are not windows to their souls, but black mirrors."

The New Yorker wanted to change it to:

Shapin mentions the struggle of parents whose autistic children’s eyes "are not windows to their souls, but black mirrors."

My original letter did not mention parents at all, nor did it need to. It was only about a 9-word phrase describing Autistic kids' eyes. Knowing that this phrase appeared in a sentence about parents does not explain or excuse it. It is just as bad to write, "Autism parents suffer because their kids have black mirrors for eyes," as, "Autistic kids have black mirrors for eyes"--and for the purposes of my letter, I don't see the value of one over the other.

I explained why I did not agree with the edit--"Bringing up parents' 'struggle,' when it's not relevant to my point, is something that I don't agree with because I think media discussions of autism are already biased toward the experiences of parents. (Of course their experiences are important; they are just not the only perspective, and they're often treated that way.) That line doesn't represent how I would write."

It's a bad habit the media has when discussing autism--always inserting the perspective of parents, whether or not there is a reason to do so.  I've read a lot of great deconstructions of this by Autistic people, but my favorite is Zoe's parody article from a few years ago, Person With Autism Manages to Do Something:

How does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.

Anyway, I suggested that if the editor wanted to provide context, it would be better to quote more of the review. Now the letter includes the entire sentence that the black mirrors line is from:

It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.

This edit is okay with me, but does have an unfortunate result. My letter begins with this quote, but only talks about black mirrors--giving the impression that there's nothing to say about the rest of this quote. However, it's actually pretty awful from beginning to end. I just decided to write in about "black mirrors" because it was the most obviously wrong and offensive part of the sentence, and I felt I could write something very short about it.

I want to address the rest of the sentence, though, except for the part about the "searing experience." If people feel "seared" by having Autistic kids, I can't argue with that--it's how they feel. I feel "seared" by reading that it's "searing" to have a kid like me--and that's how I feel. If feelings can't be criticized, it's a tie. However, I can and will criticize the list of reasons that Autistic kids are "searing."

After "black mirrors," what stuck out to me is the self harm--specifically the construction, "It's a searing experience to have a child who self-harms." I'm afraid that this is such a common construction, when writing about autism, that it's not obvious what is wrong with this picture. Imagine the following description of a violent accident:

Kendra, a kindergarten teacher, slipped on the steps of her house; she fell and cracked her head open on the sidewalk. It was very upsetting to all the people on the street to see Kendra lying there. Kendra's husband fell into a deep depression, unable to deal with what had happened. Kendra's students were very distressed when she could not come back to work because of her brain injury.

Hopefully this example gets the point across. Everyone has good reason to be seriously affected by Kendra's accident, especially her husband. But we don't expect to have their perspectives emphasized to the point that they entirely drown out Kendra's perspective of her situation. Her physical condition is only described in terms of its effect on others, and her feelings aren't described at all.

That is just a ridiculous way to describe something bad happening to Kendra--because first and foremost, it happens to Kendra. It does not happen to the people around her, no matter how much they love her. I can't speak to every person's experience of self harm, but in my experience it feels pretty bad internally--and physically, of course, it hurts a lot. No one else's reaction to self-harm is as "searing" as being in that situation yourself. To frame a child self injuring in terms of how someone else feels about it is unbelievably unempathetic to the child; and when it happens over and over in the media to the point of being unremarkable, that is really disturbing.

However, as I read the multi-faceted "searing" quote again and again, what stands out the most is the implication that autism is volitional--that Autistic children are being Autistic on purpose, just to torture the people around them. I addressed this idea a few years ago in my post Behavior vs. Ability. I was saying that those who are more empathetic to a disabled person will usually see the person's actions/inactions in terms of what they are not able to do, the fact that they may have to do things in alternate ways, and that they are trying to cope. On the other hand, there's the colder view that the actions are all there is--the person "prefers to do this," "refuses to do that." No reason is given, and no acknowledgment is given to the idea that a reason might exist. The person is just being bad.

It's subtle. But look what Shapin says:

a child who doesn’t talk

Why not "a child who can't talk?" Does Shapin mean to say that kids who can't talk are just refusing to talk? Does he really believe they can talk?

a child who demands a regularity and an order that parents can’t supply

Why not "a child who needs a regularity and an order that parents can't supply?" I doubt the child is drawing up a contract of "demands" like a rock band demanding green M&Ms in their rider. The child is upset when things aren't regular and orderly. The child is struggling, not "demanding" things.

(Imagine if the New Yorker had wanted to edit my letter to discuss "the struggles of children with black mirrors for eyes" instead of "the struggles of parents who have children with black mirrors for eyes." It's really too bad how surprising that would be.)

And how come the child "doesn't" talk, but the parents "can't" supply order? Why not say "the parents refuse to supply the order the child needs?" Because Shapin has empathy for the parents and understands there are things they can't do--but the child is just a mirror-eyed cipher.

Well, I'm just spitballing here--I don't want to go point by point through the whole sentence and edit everything to make it sound more like the child is in fact disabled--not "demanding" the things they need to function, not refusing to talk to "sear" their parents, not self-harming just for the hell of it. At that point, the sentence would no longer be as damaging to Autistic kids, but it still wouldn't be very good. ("This is the worst writing I've ever seen in the New Yorker," was my mom's comment, although her judgment may have been affected by all that searing I did to her.)

Anyway, I just wanted to give the searing sentence a more thorough look, and now I'll shuffle off with 2 boring postscripts:

1. I want to be very clear that I was not offended by the idea that Autistic kids' eyes look black, or that they look different from other people's eyes. I was offended by the context and implications. I don't like the resemblance to the Black-Eyed Children urban legend and to the purely black eyes (including black sclera) in a lot of ghost/alien/monster characters in movies and TV. I don't like the idea that our body parts aren't flesh but metal, or the idea of us having "nothing behind our eyes" where other people have souls.

However, lots of people do have glass eyes, metal spines, and so on. There's nothing supernatural about that either. When I jump on this quote like, "How dare you say this!" it is NOT because I think there's something horrific or monstrous about anybody who really has glass eyes, has very different looking eyes (no pupils, etc.), or doesn't have any eyes at all. It is because of the context and the tropes it's drawing on. And while the insult was specifically aimed at Autistic people, I don't think it does blind people any favors either to talk in such a weirdly tragifying, spooky way about eyes that look different, or eyes that do not focus and make eye contact.

2. It's hardly worth responding to, but Shapin says some really false and insulting things about the neurodiversity or Autistic self advocacy movement. I assume these are regurgitated from the book. For a smart and clear self advocate response to In a Different Key, that explains exactly how untrue these assertions are, I recommend Ari Ne'eman's review.

22 January, 2016

I wrote a great letter to the New Yorker

In Steven Shapin's review of In a Different Key, he claims that Autistic children's eyes "are not windows to their souls, but black mirrors." Actually, I'm Autistic and since I was a child, I've had completely ordinary-looking eyes--irises, pupils, and so on. I've known a lot of Autistic kids and adults, and I can testify that none of us have black mirrors for eyes.

Some people don't do much communication through eye gaze, which is presumably what Shapin meant. Many Autistic people don't make eye contact because it hurts us. Blind people don't make eye contact because they cannot see. Some people with other disabilities (like Parkinson's disease) cannot control the motions of their eyes. I've met all kinds of people who don't make eye contact, but I've never met anyone whose eyes I would describe as black mirrors. It sounds like something out of a horror movie.

Now, this is some figurative language, so maybe I'm missing the point. I'm Autistic, after all. But I think and think about this phrase, and all I see is some very negative, dehumanizing language aimed at children with a developmental disability. In an article that contains several pieces of misinformation about Autistic people, "black mirrors" is the icing on the cake.

22 December, 2015

Uncanny Valley Blues

This is just a vent with no political or artistic import. Here I sit, watching my boss's dad Richard wait on the phone with Covered California, the Obamacare organization. For the last few years Richard has occupied the thankless position of being my unpaid, uncredited support worker in matters of bureaucracy. I can't manage them myself due to difficulties using phones, approaching long chains of tasks, and regulating emotions (i.e. when under a lot of stress I usually zone out and can't do much).

Medi-Cal (Medicaid in California) has decided to occupy themselves this holiday season by mailing me some forms and demanding that I complete them in a week or else. Now, I certainly am unable to do this--they're requesting tons of things that would each individually be something I could only do on the best of all possible days. I guess Richard could theoretically do it if it was an emergency, but it wouldn't be very realistic for him either since he has plenty of things to manage aside from tracking down copies of every insurance check I've mailed in the past year.

But aside from the general obnoxiousness, there's the small detail that I am not on Medi-Cal, nor have I applied for it. I exceed the maximum income limit, and I never seriously considered applying for it even when I made less money. Well, I thought about the disabled workers program, but then an Autistic friend applied for it and was denied for not having an intellectual disability, which is pretty much like telling someone they're not blind because they can hear. After that happened to her, I wasn't going to bother. That was years ago.

But for some reason I'm hearing from Medi-Cal because they want to evaluate me, even though I make too much money and they already have that information without me, i.e. Richard, doing any of this busywork they've assigned. After Richard sits on the phone with them forever, we find out that they sent me all these forms because I said I was disabled when signing up for insurance.

Let's review: according to the ADA, a disability is a physical or mental impairment that limits a major life activity. Check. My disability is also on the list of disabilities that can qualify you for disability if you cannot work, the working disabled program if you can, a disability bus fare, and so on. I've been diagnosed with autism twice and I have the paperwork. I'm not applying for any of these things, though, like I said, since I am not eligible for most of them and when it comes to other ones, like free bus fare, it would be a lot of work to pour into something that I might not get. But. I am, objectively, disabled.

A few years ago I used to get upset about the fact that I'm unlikely to ever qualify for any services for my disability. I'd get upset because of the practicalities--I have to recruit other people to unofficially help me, which is difficult for many reasons, not least because of aspects of my disability--but mostly because it was extremely overwhelming and distressing to feel like the reality of my life was being dismissed. I stopped talking and writing about this not because the situation or my feelings improved, but because I realized it was not helpful to dwell on something that made me so upset. Besides, I'm really lucky to have so many helpful people in my life, and that's what I should focus on.

And when it comes to Medi-Cal, I do not want it because I don't need it. I hadn't been at all surprised when the Covered California website said I wasn't eligible. That was the end of it. But apparently, a disabled person who isn't eligible for Medi-Cal isn't even allowed to exist and to just answer yes on a form that asks if I am disabled, just as I enter other information about myself like my gender and race. Instead, I have to be badgered with tasks I cannot even do for having the gumption to identify as disabled when the healthcare system doesn't consider me to be so.

20 December, 2015

Moving the furniture

I'm 27 years old, "living independently," and just unable to cope with my 2 favorite diners closing in the span of 1 month. Manor Coffee Shop closed in November and I thought, at least Lucky Penny is still around. Then I happened to read online that LP was closing, but I just told myself it couldn't be true even though the article was from May.

Tonight I'm at LP and I can kind of see that everyone is talking about LP closing, and I want to ignore it and pretend I don't hear it. This is actually kind of embarrassing, that I can't bring myself to make it real by asking Nancy, the waitress, about it. It feels infinitely sad, like I am moving or graduating from college. It just has seen me through a lot of bad times.

It's not a nice restaurant but that has never been my jam.

It's a big place where one section is always closed, except for a few people eating there who I think are employees or their family members. There is a counter. There are copious green, run-down booths, almost always mostly empty when I go for breakfast or dinner. It is full right at lunchtime, but even then it's not packed.

It looks out onto Masonic and Geary through big tall windows. It's a very nice view, especially the underpass. It's one of the closest things in San Francisco to the Connecticut and New York state diners I grew up with, which are often in the middle of a highway. There are lots of nice diners (Manor Coffee Shop among them) that are just in regular buildings in the middle of small quiet streets. But there is something magically transitional about a diner with a parking lot that looks out onto streaming traffic; the sense that it's a space in the middle of a journey.

Autistic people are famously attracted to trains, and anecdotally, I sometimes think we're attracted to diners as well. I'm probably wrong, but I can't help associating both things with the big tug-of-war at the center of my mind. I love short visits to strange places, impulses, fleeting impressions; sleeping on somebody's floor; listening to a stranger's totally unrelatable life story and pretending I understand. But my memory and my processing speed just aren't good enough for me to be able to function in that kind of life. If things aren't exactly where and how I expect, I can't do much.

Trains and diners provide a happy medium where you can watch the world go by while ensconced in a comfortable booth. You get to stay passive and do pretty much the same thing, while people and places rush over you without making the demands that they do when you've actually committed to them. The menu offers lots of possibilities, but laid out and laminated.

This year, I guess, I'll be forced to make good on my plan of getting to know some new diners and visiting them nervously until they don't make me nervous anymore.

Some contenders: Tennessee Grill and Bashful Bull Too, both on Taraval Street; and Hamburger Haven, on Clement. But even though San Francisco doesn't seem like the place for a lot of diners, there are actually tons more options, which is just the kind of freedom I don't like.


Woman: When did your father's father die?
Man: James? In 1955. It's funny because I was just thinking about this in the shower today.
Woman: I was thinking about it while we were watching the movie. Because I was thinking about your grandma.

They both have interestingly powerful voices. It's hard to explain it exactly--every phrase just sounds kind of forcefully thrusted, like they're being sarcastic ("because I was THINKING about your GRANDMA"). Can't see woman's face so for some reason was assuming they're just friends, not married, because I'm imagining she's younger than him--she has brown hair and man has white hair. Imagining they are friends who spend a lot of time together because they keep talking about where they will go to eat after Lucky Penny closes. Where's open all the time and always empty and there's always parking, they ask each other.

"I guess it's just progress," she says. "Which I have trouble with. It's like Curly's, how Curly's is nicer now but you had feelings about how it was when it wasn't nice, even though you know that it's nicer now, it just makes you feel sad."

13 June, 2015

Sensory Issues

Something like this happens:

1. I'm in college, in a psychology class, where the professor tells us that Autistic people don't care about other people. We only see them as objects to get something from. (She knows I'm Autistic and she's taught Autistic students before.)

2. A friend of my friend informs her that I will never care about her because I'm Autistic.

3. One of the most popular books in the world is about an Autistic character who doesn't care about people and wishes that everyone else in the world would die. I see people reading this book all the time, including people I'm close to, and it has been recommended to me so I can learn more about autism.

4. After a mass murder, I hear people speculating that the murderer must have been Autistic.

Something like this happens: my feathers are ruffled. I feel hopeless about life; I feel like I can't trust anyone. I want to confront the person who said something. I don't want to feel obligated to be nice to them. I feel betrayed if the person was someone I liked and trusted.

If I talk to anyone about this, most people respond calmly and cheerfully. Even close friends and family aren't hurt or angry on my behalf. They have no emotional reaction--they often seem a little bored that I've brought up something so trivial--and if they even intellectually condemn what happened, their focus is on telling me that it isn't so bad.

The person didn't mean it like that.

Well, a lot of people have that misconception about Autistic people. They just don't know any better.

I shouldn't be so sensitive. I should get over it.

They wouldn't think that if they got to know me.

Mysteriously, the last statement--a compliment--is the one that bothers me the most.

Why be modest? No one else is going to say anything good about me once they know I'm Autistic. So I'll admit that I'm a kind, caring person. It's certainly the way I am most often described by people who don't know I'm Autistic. As I leave a room I sometimes hear people exclaiming, "She is so sweet!" I always do my best to be kind and polite to everyone, I volunteer, and I've chosen to take care of other people for a living.

I'm pretty much as far from the Autistic stereotype as I could get. So yes, it is probably true that if certain people were forced to spend time with me, they would eventually have to admit that I care about other people, and maybe they'd even start to wonder if this is true for other Autistic people (but I doubt it; exceptionalism is a hell of a drug). Yet somehow this fact is completely inadequate and unsatisfying to me in every way.

For many people, there's a duality between disabled people--an abstract group--and the disabled person you know. People just cannot get their heads around the idea that ableism really does affect their disabled friend or family member. How can a nice pink-collar Manic Pixie Dream Girl like me possibly be affected by the idea that Autistic people are serial killers? I'm obviously not a serial killer if you get to know me!

The rub is obviously that most people don't know each other and that most acts of discrimination aren't committed between close friends or family members. I'm supposed to be comforted by the idea that my friends and family members know I care about other people, and completely desensitized to the fact that doctors, therapists, potential employers, police, judges, or jurors might think I don't.

Even if you put aside situations where I could be concretely hurt or disadvantaged because of those stereotypes, there's still the daunting task of having to convince new people in my life that I care whether they live or die. Specifically, the fact that it's completely horrible to assume I don't care about that; and the fact that I shouldn't have to prove something so simple; and the question of how, having proved I meet a minimum standard for decency, I'm supposed to settle down and be friends with someone who assumed I didn't.

I've been thinking about this whole thing a lot lately, and I do feel a lot more friendly toward these responses than I once did. I think, if people care about me, they think it is kinder and more comforting to believe that these things don't matter; that I'm just a cuddly Autistic snowflake floating around and those kind of ideas can't ever really hurt me. I am their friend, their family member. They know I'm a nice person (even if their ideas about Autistic people in general are negative) so everyone must know that I'm a nice person (even if their ideas about Autistic people in general are negative). I must be safe and equal; if someone cares about me, it feels nicer to think that I am just silly and oversensitive, than that I could actually face discrimination for being Autistic.

12 June, 2015

A Downer

It makes me feel really hopeless when things are always set up so you're only allowed to communicate about things in real time spoken conversations, and if you try to communicate in a different format, people get mad or just won't listen at all. I can't really do real time conversations about anything important because I can't process stuff or put together words fast enough, and it is really frustrating because if you write things, people automatically see it as much more formal and intense. So sometimes, writing is just not really allowed as a format for certain conversations.

It's not a big deal and I can figure something out in most important situations, but sometimes you just need to talk to someone you don't know that well about something important--but I have to choose between either not having the conversation, having it in a format where I'll be forced to agree with everything they say because I can't follow it, or offending the person by using what they think is the wrong format.

It's a downer.