Tomorrow I am going to be interviewed by a young researcher who is doing a study on 'favourable attributes in care providers'. I've had this in my book for a couple of weeks but forgot about it until this morning when I was getting things together to go with me to the office in the morning. My day book was under a huge box of books that I've got to haul in tomorrow. We are beginning a book club at Vita, 20 staff are going to read 'The Speed of Dark' and then we'll all get together, on work time, to discuss the disability themes in the book. It's an attempt to make a large organization feel smaller, more intimate and more interactive - and at the same time address issues about disability that are profound. Good idea, no?
Well, under the box was a reminder note that I had the interview tomorrow. Many people think, from watching me present, that I'm an 'off the cuff' kind of guy. Nothing can be further from the truth, I think through pretty much everything I say and do. As a shy person, it makes me feel more confident when I have really thought about what I'm going to say.
As I've gotten older, my sense of what it takes to be a good parent, a good staff, has shifted. Once I would have said, 'compassion' or 'patience' or 'stillness'. And while I think those are important and I look for them in interviews, I don't think that any of them are paramount. In fact, each of them, alone, can do damage. Compassion can smother, patience morphs into laziness, stillness transitions into boredom. So I want to be ready for her tomorrow and I began to dig through the stuff in my briefcase.
Several years ago I had a group of self advocates do a 'list' of what they wanted in a care providers. I've kept the list all these years. But, I stopped. I'll give her the list, but it's cheating to use that as my answer. She's come to me for an opinion and I need to give her mine. So, I sat in the still quiet of the early morning to think about it. So, here's what I'm going to say.
I think that to be successful in supporting someone with a disability, as a parent, as a staff, one needs a number of attributes but chief amongst them is a sense of fair play. A sense that people with disabilities deserve just as much a shot at personal happiness and fulfillment as anyone else. As sense of outrage when the world places obstacles in front of someone with a disability that it doesn't place in front of others. There must be a sense that what's good for me needs to be available to you.
Too many parents forbid their children the right of relationship, marriage, sexuality under the guise of protection. Too many agencies forbid those in care the right of risk, of opportunity, of dreaming under fear of liability. Too many people forget that our power makes our decisions suspect and our motives questionable. We are not here to be forbidders, our goal is growth - with all that it entails. A sense of 'fair play' ensures that we always step back and think about who we are and why we are doing what we are doing. It makes us 'bitch slap' ourselves when we get a tad out of control.
So, I think that's what I'm going to say.
But the reason for this post is -- what do you think? I've got today to think about it and you as a resource. I'm going into that interview tomorrow with a list from self advocates, I wouldn't mind a list from the blog, if it ain't to much to ask.