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.