You Come Into My Home…


It seems like it’s some variation on the same thing every time.

You come into my home.

You have some set of values that you’ve learned through a seminar or wherever else professionals go to learn these things. They go by a lot of names, most of them buzzwords: Self-determination, client empowerment, etc. You also have a bunch of values around the right way and the wrong way to relate to people.

You come into my home, and you press these values on me. Sometimes gently, sometimes admonishingly, sometimes forcefully. You rarely wait to be asked for advice, or reflect on whether I want or need your advice. You just do it.

If I resist in some way, you invoke reciprocity, equality, respect, and other things like that. It doesn’t seem to occur to you that putting a nice veneer over things doesn’t mean you’re doing the right thing. Or that I might do things the way I do them for a reason. Or that in bringing your values into my home and insisting that I follow them in a relationship I’d rather not have with you, you are doing the opposite of things like self-determination or empowerment.

You don’t think about this. You assume that you are benevolent, and therefore that my resistance is not benevolent. If I am going along with you, it is because you are right, not because I am afraid of you. You act utterly unaware of the power differences between us, often because this upsets your notion of equality.

Most disabled people are not going to talk or act in the ways that you have been taught are the only respectful ways to talk or act. Because most people are not going to talk or act this way. But around you, we’re not allowed to be regular people.

We have to be a mirror image of your values, because to you that is equality. You don’t acknowledge this at all. You have all these wonderful bright shiny ideas whose original intent was to be respectful to us. But even when those ideas are correct, you act as if they are contingent on our acting the same way towards you. Whether or not we’re capable of it. Whether or not our own value systems agree with it. No matter how much harm it causes us to go along with it.

If we don’t act that way, you think we need it… explained. Or you think you’re justified in withdrawing any respect you showed to us. Respect for the right of disabled people to determine our own lives isn’t contingent on us getting to know you, on us talking a certain way to you, on us following a certain way to act, on us even liking you. But it’s so much easier, since you have the power to do it, to withdraw respect for us whenever you think we don’t respect you.

In the middle of this, I try to speak up, but it’s hard because of all the soft wonderful words you wrap everything in. You make the unreasonable sound reasonable, the inhumane sound humane. And often you actually believe it. “In the language of Orthanc, help means ruin and saving means slaying, that is plain.”

Then… someone walks in who actually knows me. It only takes a second to see what has happened. They say so. It breaks the spell of silence and softness. But then they are blamed. For getting me agitated. For “speaking for me”. For being judgmental. For not being soft and mild and sweeping things under the rug. For not using “I-statements”.

You sum the whole thing up with “Things were doing just great before you came in…” What this means is that when you were speaking for me without realizing it, things were fine. When someone else is interpreting my behavior into English, then something’s wrong. Even if they’re more right than you are. You’ve built up an imaginary world where I am relating to you in your ideal way because I want to, rather than because I know that relating to you in any other way could be dangerous, especially without witnesses.

This has happened more than once. It happens over and over again. It happens to more people than me. But if you — the people who do this to disabled people — read this, I doubt you’d think it applied to you. You would probably either focus on me for “misinterpreting” things or being ungrateful for your wonderful attitudes, or skip over that and believe I must be describing some other encounter with some other staff. It couldn’t possibly be you. Because you mean well.

And the scary thing is that if you read this, you might end up applying it in some other way that disempowers disabled people. Just as you have used the word self-determination to undermine my self-determination, the word empowerment to make sure that I am disempowered, the word independence to ensure that I am dependent on the people you prefer. Unless you understand the underlying facts of these situations, in terms of power, in terms of ability, in terms of a lot of things, you can toss around words all you want and all you’ll get is the same scenario. Over, and over, and over again.

David Rovics wrote a song once. He said, “If you find this song offensive, it’s probably about you.” I am sure that many people who have done this to me would find this highly offensive, disrespectful, and a number of other things. After all, I’m not being grateful, I’m not following a set of values I never agreed to in the first place, I’m (in their eyes) contradicting the things I said and did while too terrified to do anything else (which they will see as dishonest), I’m not giving them the chance to prove that they are different and they are the one that’s not doing this. (Hint: Don’t tell me and demand gratitude and obedience. Show me. If you aren’t doing this, I’ll find out, and I won’t need to be told. If you tell me, and then want something out of me based on your saying you’re not this kind of person, then you almost certainly are this kind of person.) And I’m certainly not couching this in terms of my feelings, because it’s not about that.

It’s about power, and who has it, and who doesn’t, and who maintains it while thinking or acting like they’re not. And who sits there going along with more than they want to in meetings because they’re legitimately afraid and things are moving too fast and language is confusing and so forth. But who can type out later exactly what’s going on.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

3 responses »

  1. This is my very favorite of your posts that I have found so far. It is — to me — quite frightening to eralize not only do people in positions of relative power not see this, and not only are there systemic elements at work to make it less likely to see this, but there is so much -individual- investment in not seeing this. Often the rage at having it even named, even brought up at all, fuels a resistence to seeing it.

    I think it is because people tend to put extraordinary value in things that are a sure thing. That is, someone who thinks divorce is out of the question becomes enraged when it is raised as apossible outcome. Someone who is in an unchallengable postion of authority (say, a major CEO) becomes enraged when the challenge does come (say, for tax evasion). And someone who is certain beyond any doubt that he or she is a Good Person becomes enraged when the question of whether this is true comes up.

    I think it’s typical to want to be certain about things. But I also think it is very dangerous not to try to be at least a little uncertain when you are in a position of power. That may take some creativity to figure out what works for you, but that should be just a part of the responsibility that comes with the power.

  2. I’m glad to see CT’s post here because it reassures me that I’m not the only one reading these ancient posts 1.5 years late AND feeling tempted to reply!

    Some of it might be an issue of training. At one point I got a degree in social work (though I’m not actively using it right now). And my program did teach the usual concepts of empowerment and self-deterimination. But one of the things I think the program did right was that they tried to make us conscious that any time a social worker and a client are paired together (and you could substitute any professional for the term “social worker”), there is already INHERENTLY an imbalance of power. And as CT says here (and as Ballastexistenz says more indirectly but very eloquently) it is the moral and ethical and professonal obligation of the social worker (or substitute perferred term here) to avoid abusing their power, and avoid creating a situation where a client is going to feel obligated to do or say certain things simply to please the professional.

    Sometimes this can be tricky. Even when their training may be basically pretty good, some people are just too resistant to the idea that THEY could ever hold (or abuse) power to really absorb the idea that they have to watch out for how the built-in power imbalance affects their client in potentially harmful ways. (I have met some social work students who seemed to think that simply not wanting to hold power over their clients, or simply believing that their clients were inherently equal and had the right to make their own decisions, necessarily by itself could obliviate the insidious effects of power imbalance.) Or even when they are better conscious of these issues, they might still not know how to address it due to lack of experience, or due to lack of continued appropriate training in this area under their supervisors. They may think that they’re able to identify when a client is just “going along,” or that they’re “clearly communicating respect for the client’s self-deterimination” or whatever, but may lack the experience and more in-depth training or appropriate supervision (with a supervisor who knows how to guide the social worker in addressing these issues) to recognize the dynamics that are REALLY going on from the client’s perspective.

    Hope this makes sense. This is not to defend the people who are simply unethical or unprofessional. Or the ones who irresponsibly assume that good intentions are good enough. I just wanted to point out that there are multiple reasons why even a well-intended professional who THINKS they are paying attention to power dynamics may still behave in ways that end up oppressing instead of empowering.

    One issue might be lack of awareness of (or training in) issues that come up with clients who have been institutionalized. Ballastexistenz has spoken elsewhere in this blog (or maybe I’m thinking of her interview with Lisa, which I think is transcribed elsewhere) about how institutionalization can “train” (or intimidate) some people into a kind of submissiveness. I would guess that would tend to make them even more vulnerable in future to even the most subtle misuses of power–because they’ve already been conditioned not to resist. Maybe part of the problem is that more professionals (and non-professional staff) need to be trained to pick up on this kind of issue and how to deal with that so that a consumer can REALLY feel able to make their own choices — not just pretend to make choices that they think the professional wants them to make so the professional can go away thinking they’ve exercised self-deterimination when they haven’t.

    Sorry for blathering. I’m speaking (ok, writing) off the cuff here, so if I sound a little disorganized that’s why.

  3. I’m one of those people who goes into homes every day as a “therapist”. I’ve bookmarked this post because I need to remind myself of your perspective – possibly very similar to so many people I work for and with each day. Thank you.

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