I’ve been threatening this post for a long time, so here it is. ;-) Several other posts have alluded to things in this post, but I’ve finally written it.
Links from Mouth Magazine’s website (they have a lot of stuff on do-gooders):
“Care is always voluntary. You can’t buy it, you can’t manufacture it or produce it,” McKnight reminds us. Sometimes hookers or Do-Gooders will fake it, if you pay them good. I forget, is it in hospitals or with hookers where you’re supposed to put the money on the bed?
When their car payments, rent, insurance premiums and careers come out of helping, maybe their altruism’s not really what it’s about. It’s an exchange of goods and services for money that we’re talking about. You can call that “care,” but that would just be the standard PR in my book.
My workday started when the nurse handed me the duty list. It was my job to do what was on that list and also to answer the call lights. I pitied those poor people. They needed my help. I had to do something to make their lives better: adjust the bed, reposition them, open the curtains… and never know or ask if that’s what they wanted at all.
Completing the duty list was helping the patients. Answering call lights was not my idea of help. When I saw a call light flash above a patient’s door, dread and fear came over me. A call light meant that a patient wanted something unknown, something not on the duty list, something I might not know how to do, something I might not want to do.
If a patient dared ask for any of the above, here came The Smile. Tilting my head 35 degrees to the right, I contorted my face into a large, painful, cheek-to-cheek smile, exposed my teeth, glared at them and said “I’ll help you in a little while. Other patients need me right now.” Then I could get back to the real helping.
Helping reduced suffering and made me feel good. After I had finished acts of help, I waited like a vulture for expressions of gratitude. I’d helped, hadn’t I? When thank-yous weren’t forthcoming, it was clear to me that those people weren’t even human enough to be grateful.
On March 21, 2000, Brianna advised me that the teacher with the french fry issues, Ms. W R, works or helps in the lunchroom and she refused to give Brianna french fries although it was her choice of lunch food.
Brianna has attempted to avoid this teacher’s line so that she may continue to have autonomy in her lunch routine. Today, March 23, 2000, this “teacher” threatened Brianna in the lunchroom, saying, “This is the last time you are going to sneak french fries and a corn dog by me again! Tomorrow you are having soup. I’ll have soup with you.”
Because Brianna has previously been locked in closets by “teachers” at both a Washoe County elementary school site and a Washoe County Middle School site, Brianna has a very real fear, based on solid experiential knowledge, that she is in danger.
(The student described in the above article then faced retaliation that is described at the bottom of this page.)
One of my best friends is a safety engineer who periodically goes on a prolonged rant about do-gooder safety. His primary points are (1) that EVERYONE is “safer” with a butt full of Thorazine and in four-point restraints, and (2) that do-gooder safety displaces the real safety issues. Real safety issues include wheelchair lifts that are designed with human factors of use in mind and negative pressure rooms that keep the air moving in the right way.
But is there really anything wrong with having a moral sensibility which includes patting oneself warmly on the back more than once in a while? Aren’t we talking about vanity here – and if we are, so what? Excessive self confidence seems to be an important ingredient on the road to success in many other professions. Beautiful people are irritating but harmless, surely? What is different about people who work in special needs?
The problem is really to do with honesty. One of the principle motives for lying is to protect our self-esteem – to stop ourselves looking stupid, incompetent, ignorant and out of our depth. Enter a collegial professional groupthinked into maintaining an excessively high level of self-esteem, and here is someone prepared to lie at the drop of a hat. Equally, a key worker overly concerned with being a fantastic human being is unlikely to admit being fallible – and say those horrible words, “I don’t know” (or mean it).
Professional caretakers are made, not born. How does it happen? Put a third-grade “helper” next to a third grade “helpee”. Add a sizable amount of adult approval, and there you have it.
It is not entirely thrilling that kids who take part in friendship circles during school go on to careers in human service. Don’t misunderstand. Lots of wonderful people choose this profession. However, an unfortunate result is that lots of children and adults with mental and physical handicaps have legions of professional caregivers, but no friends in their lives. We must guard against merely creating another generation of “professionals” and “clients”, with the former group seen as perpetually competent, and the latter, perpetually needy.
One of the above articles, all of which explore do-gooderism from different angles, defines a do-gooder as someone who confuses doing the right thing with feeling good. That, on its own, seems to lead to all the rest of the problems that a do-gooder attitude creates.
One of those problems is that a do-gooder will generally stop doing something once it starts getting past a certain level of unpleasantness. And the right thing to do, is not always a pleasant thing to do, or even a safe thing to do, and it can even be so unpleasant that the thought that it is probably the right thing doesn’t make it pleasant enough to be worth it for the “good feeling” it supposedly generates.
I’ve done things that I’m fairly sure were right (or close to it), but that terrified me. Or genuinely inconvenienced me (not just something that looked inconvenient but that I was really fine with). Or took away from things that I would have rather been doing. Or bored me. Or made me look really bad to both people whose opinion mattered to me and people whose opinion didn’t. Or endangered me. Or forced me to admit mistakes. Or any number of other things. I’ve seen other people do things they were fairly sure were right (or close to it) in the same kinds of situations and I have been very glad they have.
Do-gooders don’t want to be bored. Or scared. Or genuinely (rather than just outwardly looking like it) inconvenienced. Or looking bad to people. They won’t do the right thing when it actually hurts (rather than just looks like it hurts), and they might just do the wrong thing because it makes them feel better. Not that the right thing to do is always painful, or that it never feels good, or is never fun — because it can go either way — but that do-gooders will actually gauge whether something is right on whether it is causes them sufficient feelings of pleasure or strokes their ego enough. And they generally won’t venture off of safe ground or stick around once the going gets too rough for their personal emotional payoff to be worth it.
A related aspect of do-gooderism was summed up very well by a friend: “I wish my staff would quit being so damned helpful, and start being useful.” Some of her staff tend to rush in and try to change things in ways that they think make things better, no matter how many times that she tells them they make things worse. For instance, they often move things out of her reach because they look “more orderly” than when she puts them within reach, or tuck in the ends of her bedsheets because they look “neat” that way despite the fact that she then can’t maneuver properly in bed without assistance. In one of the above articles, someone talks about a staff person who loves “helpfully” making French toast when he himself wants to eat bagels. It makes staff feel good and helpful to do these things, but the things don’t necessarily tie in well with their clients’ wishes or access requirements. The “feeling good” part overrides things like usefulness and job descriptions.
Wanting to feel good all the time while doing your job can also turn into cutting corners. Cutting corners is a very serious problem when your job directly affects another person’s well-being, no matter what the job is. It happens all the time in human services. And as a person who is both part of a highly disregardable class of people (developmentally disabled, unemployed), and someone who often lacks a means of effective communication (require technology to communicate and may not always be able do so even then), I can say that people like me (including those even more disadvantaged) are among of the most convenient corners to cut.
I used to have a staff person whose idea of giving me services was to take me to Carl’s Junior, plunk my wheelchair in a corner, buy me lunch, and chat with her friends who worked there until her shift was over. One day, I had almost no voluntary movement. I had peed on the couch I was lying on, had been lying in it in exactly the same position for hours, and was in the kind of nasty pain that precedes pressure sores. So she couldn’t take me to Carl’s Junior and chat with her friends. Once she saw that I had no way of communicating with her other than screaming, she let loose with a constant barrage of verbal abuse alternated with sadistic teasing, told me that it was too inconvenient for her to clean up my urine so she wasn’t going to, and went home. My situation required her to do actual work and she didn’t want to deal with actual work, so she took it out on me.
That may be an extreme example of cutting corners, and the woman was something worse than your average do-gooder, but the amount of times I have seen that general kind of thing suddenly happen when it became clear that I had no means of talking back, convinces me that cutting corners is as commonplace in the “helping professions” as anywhere else, that many people will do it as much as they can get away with, and that do-gooders are among this group of people. And that ability to get away with it often hinges on the social status of the people being screwed over by it.
Someone in another of the articles described his autistic son being taken to school by a do-gooder. This do-gooder cut corners by failing repeatedly to make sure that his son would not be able to jump out of the car. When confronted about it, then on top of the initial cutting corners, they lied about what had happened, because do-gooders also won’t admit when they are wrong (it destroys the saintly image of perfection).
Not admitting they are wrong is one of the things that can make do-gooders especially dangerous. When this happens in extreme forms, it can take the form of an entire web of lies designed to protect their image, no matter how many people get hurt.
This happened recently in a struggle with my local housing authority. They were doing something that hurt tenants (and probably killed a few), but that didn’t fit in with their beautiful shiny image as friends and helpers to the poor and oppressed everywhere. People had been complaining for years. Instead of changing what they were doing, they simply denied that it was happening and assured everyone that we were safe no matter how many of us got hurt. When we tried to speak to the mayor, he did not even listen to our complaints, but simply assured us that the head of the housing authority was a wonderful man and that we should be grateful for what we got and not “do this” to him (at that point two of us were living on the streets because we could no longer safely breathe the air in our apartments). In the end (and only after public embarrassment — and this was after years of other people complaining directly to them), they fixed their construction techniques to the point where the air in here is now breathable, but acted as if they had been doing it right all along and those of us who complained were still somehow bad.
As someone else involved in this put it, this is what happens when a person or organization pays more attention to their reputation than to what they are actually doing. Do-gooders often fall into this trap and the result is to feel that they are something close to wonderful and perfect, and anyone who complains, is not really being hurt by them, but is just a bad person in some way. (Hint: Nobody — nobody — is so wonderful and perfect that they never hurt someone.) I was shocked by the mayor’s repeated assertions that the head of the housing authority is a “wonderful man” and that we were “ungrateful”, because no matter how wonderful the guy is (and, as an aside, he really isn’t) and how much actual good he’s done in the past, it wouldn’t change that something going on now in his company was hurting people. His wonderfulness or lack thereof wasn’t the point, but the collective ego of the housing authority became more of the point than the welfare of the tenants. (I once made a friend promise to please smack me hard if I ever decide that I’m that infallible.)
It’s also common for do-gooderism to show up in the kinds of help that are made available to people. Many parts of the “helping systems” have pre-designed programs with a pre-packaged, ideal client in mind. Nobody really fits that pre-packaged client, but some do more than others in certain ways. My own encounters with pre-packaged programs have often involved a clash between programs designed for people with a relatively static set of abilities, and the fact that my abilities (intellectual, perceptual, motor, and just about anything else) are in constant unpredictable flux.
This kind of flux is common for autistic people. It is common for people with chronic pain conditions where pain can vary greatly one day to the next. It is experienced by people with autoimmune diseases like MS that can involve flares and remissions. It’s even experienced by non-disabled people, in less dramatic form, when they are sick or stressed out.
The “helping systems” don’t often plan for this stuff. But they have a whole other plan. Full of things they believe will help us, and things they feel good about doing. This is the stuff that we are supposed to accept and even feel grateful for. (Billy Golfus does a great job in one of the above articles, of dismantling the whole idea that this is a caring/gratitude interaction rather than a business interaction, and further dismantling the popular idea that we as disabled people are truly the customers in this business interaction.) Do-gooders get to define what is and is not help, and recipients of said “help” who are less than grateful for said “help” are considered to have suspect judgment and character.
Do-gooders can take the easy way out by sticking to these plans they have for us. If we don’t fit the plans, it is our problem, not theirs. Often, this turns into a perverse situation where a person is receiving a number of services they don’t need and failing to receive services they do need.
Here’s a perfect picture of that, in Mouth’s Who’s In Charge? (Mouth has a lot of great stuff on do-gooders). They show a picture, taken at a cancer camp, of a boy with no legs on a skateboard, and a woman “helpfully” offering her arm while smiling at him. The boy knows that if he grabs her arm, he will lose his balance and fall. The woman doesn’t know it. If he needs other assistance, she isn’t giving it, because she’s too busy offering her own version of “help”. That’s a big chunk of do-gooderism in a nutshell.
In all these ways, do-gooderism turns into a sure pathway to corruption. Many disabled people have to endure the results of that corruption every day, because it is rampant in the “helping systems,” which do-gooders tend to flock towards. I suspect any other group of people afflicted with large quantities of do-gooder social workers aimed at them has to endure this corruption too. Not all people who work in this system are do-gooders, but so many are that it’s almost astounding to come across the ones who aren’t.
Do-gooderism of course isn’t always an either-or thing. There’s not always do-gooders and non-do-gooders with a sharp dividing line. Anyone can develop do-gooder tendencies, or have do-gooder type urges crop up at inopportune moments. I’m not particularly do-gooderish most of the time, to my knowledge, but I do occasionally do something to feel emotionally like I’m doing something useful, rather than because it’s useful — most people are at least somewhat indoctrinated into that kind of thing. It becomes very serious, though, when a person ignores the way reality smacks them around after doing things like that, and continues to do things primarily from do-gooderish (which are actually basically very selfish, despite their veneer of altruism) motivations.
The fact that do-gooderism is selfishness masquerading as altruism, is important. People often think that a backlash against do-gooderism is a backlash against selflessness. Do-gooderism is almost as far as you can get from selfless, but it is very good at looking selfless, and at making detractors look like people who just don’t like that people help each other. That people help each other, should genuinely help each other, is a fact. Do-gooderism is an obstacle to true help (and an obstacle to a whole lot of good things that it pretends to be), and objections to do-gooderism are often from people who know the difference between do-gooderism and the real thing.
What do I tend to look for in staff, in hopes that they aren’t do-gooders?
- People who can laugh at themselves and can accept comfortably when I laugh at myself.
- People who can accept that the system is frequently screwed up, and don’t feel the need to defend it when it hurts people.
- People who are unwilling to bend the rules to get away with things they shouldn’t, but willing to bend the rules when the rules are unfair to or hurting clients.
- People who primarily learn from their mistakes rather than lying or defending them.
- People who are clearly not just basking in the glow of their own wonderfulness.
- People who treat me with just as much respect when I’m immobile or screaming and banging my head, as when I’m typing out complex thoughts.
- People who, if they view me as “higher functioning” than other clients, treat others just as respectfully as they treat me, or, if they view me as “lower functioning” than other clients, treat me just as respectfully as they treat others. Or who, better yet, don’t make such crude comparisons at all.
- People who accept that I probably know my own brain and body better than they do, and that corrections are not meant as an insult to them.
- People who may like when they have a nice social relationship with a client, but who are primarily expecting that they will do their job and that any given client may or may not like them on a personal level.
- People who accept that everyone — every single person, including them, including me — operates on the basis of at least some prejudices, and that when these prejudices turn out wrong, the best thing to do is change them.
- People who understand that the relationship between staff and client is a relationship of power and privilege as much as a job and that this will at some point come into play.
- People who seem to act in genuine ethical ways, rather than either recite rigid ethical codes/jargon (Social Role Valorization, Person-First Language, etc) that they have been taught in staff trainings, or disregard ethics altogether.
- People who do not seem to have an overriding emotional need for clients to need them.
- People who accept that the messiness of real life demands creative and not-always-adequate solutions, but who at the same time do not invoke that messiness to excuse doing something truly wrong.
Of course there’s no formula for this. Reality tends to screw up even the best of formulas.
Nobody’s perfect, and nobody’s going to be all those things all the time, human nature being what it is. But those things are a good start. Even my favorite staff struggled with these things. What made her good at her job was the fact that she did and does struggle rather than giving in to whatever seems easiest. I was impressed when I first met her by the fact that she seemed to be the sort of person who, when she screwed up, genuinely learned from it. That’s the kind of person I want to be, and the kind of person I like to be around. That’s what I like so much about Dave Hingsburger’s writing, that he doesn’t gloss over that particular struggle, but highlights it, and changes his mind when he thinks he’s been wrong (I am told by more than one person who knows him, that he doesn’t just write like that, but behaves like that too).
Do-gooderism is one of those things that it’s useful to learn about, because it’s useful to know what traps not to fall into, or to dig yourself out of when you fall into them. And it’s also useful, when you’re on the receiving end of it, to understand what it is you’re looking at.