Spider Smiles


It’s always “fun” to wake up to this kind of spider-smile leaning over your bed:

A spidery-looking Other Mother leans over Coraline with a creepy smile.

[Image description: From “Coraline”, a stop-motion movie. The main character, a girl named Coraline, is standing there as her “Other Mother” (a spider-like monster pretending to look like her mother, but with buttons for eyes) leans over her with a creepy smile.]

…and then have to let the person, among other things, wash your private parts. And to know you pretty much have to let them, because you don’t want to get a reputation for rejecting people for no reason (or “not good enough” reason).

And no, it’s not a sexual kind of creepiness. It’s more like a weird power dynamic, where the person thinks everyone loves her and that she can do no wrong, while running roughshod over everyone, human or otherwise, even above their vocal objections to her invasiveness. You can explain it to her calmly, or shout “No! Stop! Stop NOW!” and all she’ll do is giggle and keep doing whatever she’s doing, whether it’s barging into your bathroom while you’re on the toilet, trying to touch a pet who doesn’t want to be touched, or otherwise violating people in various ways. After awhile the giggling and smiling gets more and more creepy, and happens with more frequency the more you try to assert yourself. I think the spider-like component — which another client of hers has described as an “I’m gonna eat you” smile — comes from the tendency of people like this to “feed on” imaginary gratitude and the like (see My Contaminated Smile for something similar).

This kind of behavior is especially damaging to anyone who (like me) is so used to these boundaries being crossed that I often don’t think to defend them. As Dave Hingsburger explained in a video I saw once, that leaves us open to serious forms of abuse because abusers look for people who don’t push back the minute we experience invasion. It also erodes the boundaries between your own home and institutions. It’s a lot more damaging — especially after each “little instance” begins to pile up into something enormous — than any one instance would look on the surface to most people.

And I suspect a lot of people think it doesn’t matter when done to people who aren’t going to experience a whole lot of bodily privacy anyway. Wrong. I used to think it didn’t matter so much because I was used to lacking privacy and was very late to develop body modesty anyway, until I heard that explanation about how being “used to it” primes us for later abuse. Ever since then I’ve tried to create privacy in various ways when possible, even though I’m not used to it and don’t automatically “feel” some of those first levels of invasion the same way other people do. (I’m trying to build up to where I do feel them, with some success so far.)

One time she explained to me she was incapable of abusing power, because she was a Christian. I would love it if the world really worked that way (for any religion or lack thereof). It would be a much better place. But meanwhile she goes merrily on her way, dispensing really disturbing (but not technically against any rules) experiences with a big creepy smile and a chirpy sing-song voice.

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

17 responses »

  1. That you’re having to go through this makes me very upset. Please don’t feel that this is something that you have to accept without resistance. Do you need help figuring out what to do about it?

  2. The people who insist that they’re incapable of abusing power because of any reason at all are people I do not ever trust, because it seems to me that they say it before, during, or after one of those impossible abuses.

  3. Wow, having someone like that have power of you is scary. I would be afraid to even write about this. Maybe you are and did it anyway.

    I read the same thing about there being people who looked for people who did not “push back” when they violate someone’s boundaries. The discussion was not about disabled people but about women. Overall they had a lot of important things to say about women’s safety, but one thing that made me really uncomfortable reading it was that they seemed to equate being autistic (or just “creepy,” although “asperger’s” was explicitly mentioned) with violating people’s boundaries. To their credit, despite being all nonautistic they did seem to realize there was something wrong with this, they just weren’t 100% sure what it was.

    I think, unlike you, maybe most people already know when someone is crossing their boundaries and actually need to be thinking about when other people do not do that but yet they still uncomfortable. I don’t mean that I want to people to second guess themselves for a moment if they, justifiably or not, really don’t feel safe. This is especially the case if they are a part of a group that is frequently the target of violence, like women are. But I think you pointed out elsewhere that “creepy” people (in the sense the word tends to be thrown around, because I know someone will say “but what about the people who are REALLY creepy?” even though I don’t use that word myself) are not more or less likely to violate people’s boundaries. In other words, such people are just as likely as anyone to assault you, but they are not actually any more likely. I think focusing on harmless things like rocking distracts people from real threats and real violations of their boundaries by people who may well be able to smile as they do it… never mind that the result is not so good for us either, to say the least, if we get labeled a creep for totally innocuous and maybe unavoidable behaviors.

    This is not to discount anything of what you’ve said about your own experiences, I fully believe it. Actually, although I still need to do the bit in the last paragraph myself, I do often have a hard time saying “no” even when I know there’s something wrong. If there are people who can tell that by watching me that’s scary too.

  4. I actually know what I can do about it. I have the total right to request that any specific person not be sent to my home, for any reason (although from past experience, they will still try to sneak that person into your home as often as they can get away with it, so it takes a lot of struggle to keep them permanently out). The question is whether it’s worth the consequences. Basically I have to weigh two possibilities. One is keeping the person here (whenever she’s sent) with all that entails. The other is potentially being looked at as a “difficult” client who refuses too many staff, with all that entails (weirdly enough, the first time I had to deal with that reputation, I’d had the same staff person for three years, which is forever in human services terms… someone was just trying to create a bad impression of me for someone else, so they started that rumor). So I try to save the “you’re not allowed here ever” thing for very flagrant abuse, neglect, or incompetence, and what I’m dealing with here isn’t nearly as bad as the people I’ve actually banned from my apartment.

  5. Pancho: I think we’re using the word “creepy” in totally different ways. Mine depends on there being the presence of something actually wrong, not just unusual-looking.

    • Okay also I read your other comment more closely about whether it’s worth it to ask that she not be sent- this pisses me off. Just getting that out. People really shouldn’t have to deal with that and should be able to choose their staff people. ‘Course you know that already. Do keep standing up for yourself, though.

      It would really improve my quality of life a lot if I could get help with some things (a few hours once a week would cover it I think), but when I hear about the power dynamics like this and relate to the times people have had power over ME, I wouldn’t want to bring that in even if I could. Of course I’m lucky enough that I can survive in our current society without those sorts of services, it’s just a matter of occasionally doing things like collapsing on the sidewalk and hoping no one gets too upset (yeah I’ve had a good day today).

      Seriously though I wish there was something concrete I could do to help you and other people in your situation, even though it seems like whenever I try to Do Things I end up failing.

  6. You’re right- we were using it in so different ways I didn’t even notice you had used it. Which is just a language thing and not a big deal, feel free to keep saying it.

  7. People who are convinced it is “impossible” for them to abuse power shouldn’t be given power.

    And, there should be more freedom for people to ask that certain staff not come into their homes without having to fear consequences such as gaining a reputation of being a client who turns away staff. Because having that kind of reputation shouldn’t be seen as a negative thing, it should be seen as a positive sign of someone who knows what they need, want, deserve, have a right to, including safety and comfort with the people who are supposed to be taking care of them.

  8. Okay maybe I’m commenting too much but…

    Thanks Andrea. I was trying to figure out why/how this situation could come up. The only times I’ve had to really truly worry about something in the way amanda baggs was talking about was during my experiences with institutionalization (which were better and lesser than many people’s, but still pretty awful). I was really confused about how she could be in that kind of situation with a staff person inside her own home.

    However, now that I’ve read your comment I think the reason why they don’t see it “as a positive sign of someone who knows what they need, want, deserve, have a right to” is because they don’t view amanda baggs as a client/boss. Many of them must see her and the other people they provide services to as chores, problems, or maybe a source of revenue and their “boss” is the agency that helps organize stuff like that. And I’m assuming the agency gets its funding from various government sources and feels justified in doing whatever they want with it.

    So I think what we need is reorientation in how service providers see themselves. Some really forceful presentations on ethics etc as part of training would help, but think the biggest problem is the actual way the revenue and such is set up. Like ideally the hierarchy works something like this:

    Client—->Agency (if applicable) —-> Service workers —> Government (including funding)

    I have the government on the bottom because ideally the role of the government would be to serve the people rather than make them do things.

    And what we have now is:

    Government—> Agency—-> Service workers—-> Client

    Basically from someone’s in amanda baggs’ position, there is this blobby thing on top of her and she has is having to deal with it all at once. While that’s going on, everyone above her is in a position that makes them view her as a liability or chore, unless they’re just very moral people and are able to overcome that.

    Does this make sense to everyone/anyone? I guess if it does the next question is how we fix this. I’m afraid it might involve establishing a new government, but I’m open to other ideas.

  9. Oh also I just realized I could have given the impression this person is here every day. She’s not. Without getting too specific, she’s among a group of people who all rotate between different clients different days of the week, and they aren’t anyone’s main staff people. So at most I see her maybe four days a week and at the least not at all. If she were here every day I would be trying to do more about it (although in the past I’ve put up with worse).

  10. I personally understood that but I’m still upset about it. Plus that means she’s seeing other people other days of the week and they’re probably afraid to say anything too.

    I’m still trusting your judgement/decisions though.

    I’ll stop hogging the comments…

  11. “And I suspect a lot of people think it doesn’t matter when done to people who aren’t going to experience a whole lot of bodily privacy anyway.”

    That is why it should matter even more. I don’t know how clear I am, so much of this post is so familiar in so many ways, and I find it worrying that my gut reaction is to curl up in a ball and shake and disappear inside myself, when I know I should be angry – it is easier to be angry about things when you have a distance from them. A few weeks ago I was harrassed by a man at the local shopping centre telling me, “there will be no wheelchairs in heaven”, and then when I told him to leave me alone, he started standing over me sitting in my scooter and yelling in my face. I was angry about him inflicting his religious weirdness on me, but it took several hours for me to realise – hey, he was PHYSICALLY intimidating me. Because I’m so used to it.

  12. I am so angry on your behalf. I wish there was something that could fix this.

    Of course, long-term, getting people to view developmentally disabled folks as fully living, fully human PEOPLE will fix this. But in the short-to-medium-term, you and millions of others are still stuck in this nasty situation. What a pile of excrement.

  13. I generally do not require the use of staff to assist myself. In some ways I’ve been lucky-my mom is a psychiatrist, so she has been able to recognize and steer me away from ripoff artists like your spider lady. At one point, when I had a psychotic outbreak, my staff were discussing putting me in a school for delinquents. Mom wisely turned down the idea.

    Yet I don’t mean to imply that she can always act as my bulldog. The negative side is that, due to the influence of her profession, I feel no embarrassment or entitlement to privacy with psychiatrists/psychologists or people who temporarily take on similar roles (such as school advisors). I take a lot of meds, most of which are necessary because of health issues, and have no ability to empathize with people who find taking prescription drugs humiliating or unnecessary.

    If I were not lucky enough to have little exposure to institutions and predators, I could easily have been exploited into revealing private information or accepting medical abuse.

  14. I finally put my foot down and banned her, because I was avoiding getting certain things done because she’d be the one to have to do them and I wasn’t comfortable with that. Now to see if they’ll actually stop sending her or not. Unfortunately, the first person they sent in her stead seemed prone to long, unprovoked monologues on how anyone who didn’t immediately euthanize their cat upon discovery of just about any illness was selfish and cruel. (I did not explain to her that Fey has a painful nerve condition, for obvious reasons. There are times when I’m just not up for a fight. And Fey clearly loves being alive. If I were feeling up for more fighting than I was comfortable with at that moment, I’d have sent her a link to Mini-feline-ethics post: the power of life and death.) But at least she got the work done without being invasive… just happened to make it sound like I was a horrible person for not killing my cat the moment her health wasn’t perfect. GAH. (And I’m not saying this in a strawman sense, the examples she gave were seriously not conditions that warrant euthanasia even to the average person’s standards let alone mine.)

  15. Congratulations with that. Hopefully this new person is that sort of person that can keep her opinions and work separate, though I can see how the unprovoked monologues could be REALLY uncomfortable.

    I have to admit I reacted more like Book Girl said she did than actually being angry, I just wanted to be angry. But I’m glad you were able to stand up for yourself here.

  16. Thanks for writing about this, Miss Baggs (I’m sorry for being so stiff and formal, but I don’t feel that I know you well enough to call you by your first name).

    I’ve had the same experiences in psychiatric hospitals. They ignored me when I had severe and painful reactions to medication, and I find it very interesting that they finally did something when my parents were visiting and watching. They thought nothing of just walking into our rooms, so patients all went into the bathroom to change clothes. If you got upset, you had two “choices”: Take meds or have them forced into you. Not to mention being “body-searched,” where a female staff member just comes up to you and puts their hands up your shirt and down your pants.

    But I completely what you meant about the most disturbing thing: Their power. Other people you can remove yourself from without consequence. These people control your food, clothing, shelter, and bodily integrity. And they’re the “healthy, full people” while you’re the “sick, half person,” so their opinion is automatically more right. They can say what they want anytime, while you are forced to pick and choose your words carefully to avoid “sending the wrong message.”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s