Sunday, July 15, 2007


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.



wendy said...

I have worked in group homes for 18 years or so now and I agree with you on this on so many levels. So often we, as staff, expect better of the people we serve than we do of ourselves. I don't always make my bed (rarely, in fact) or eat a perfectly balanced diet. I have been known to skip a meal or eat cereal for dinner or cake for breakfast. Yet there is so much resistance sometimes to allowing people with developmental disabilities the right to be fully human by making imperfect choices. After much soul searching the home where I work has adopted an "open fridge policy". People are free to eat when they want and what they want unless there is compelling medical reason to the contrary. Balanced meals are provided three times a day and healthy snacks are always available but if a resident prefers to eat something else or to eat later those choices are respected. How basic a right is that? We need to be flexible enough to allow for choice, even when it is not the perfect one.
Feeling funny sending this off. I think of you as "the Great Guru" and can't imagine that I have anything to add...but your post made me think of this.

Jodi said...

Good sense of humor (loves to laugh)


Good problem-solver










Follows through

Matter-of-fact demeanor

Natural (without pretense)


Knows when to step in and when to give him space

Anonymous said...

My immediate thought was 'respect'. A sense of fair play - wouldn't have come straight to mind, but perhaps it amounts to the same thing, without the stiffness or rote quality.

It occurs to me, too, that fair play doesn't require the staff to be more-than-human. Just fully human.

Stephanie said...

I agree with all of the above and would add commitment.

Anna Salamon said...

A willingness to admit mistakes.
Awareness that the other person's life matters more than your personal ego.

Anonymous said...

I saw this quote recently, and it's quite nice here:

“The central struggle of parenthood is to let our hopes for our children outweigh our fears.”
~Ellen Goodman

Belinda said...

The earlier comments are so right on. I second them all.

I had a conversation this morning with someone who was training someone else to work one on one with a certain lady. The new staff was feeling overwhelmed by all that there was to remember and her trainer told her--so wisely, "What matters dear, is your relationship with that lady in there. As long as you get that right, every thing else--paperwork--where things are kept etc. will fall into place."

I would say:




Anonymous said...

The ability to learn from mistakes, but not to be too afraid to make them in the first place.

Anonymous said...

After 15 years it seems to me that the most important things that I need to remember everday are:

"it's not about you!"
"meet 'em where they are"

Anonymous said...

This is a few days late, and you prob do not need the feedback now-[I have no idea of your tomorrows or my yesterdays with our time differences :) ], but I recall a ''saying'' where a parent says to the teacher''hey that child's art work is brilliant-how do you get them to paint like that?'' And her reply is ''you just have to know when to take it away'' I think kids/ppl in real life , with or without disabilities are like that. You just need to know when to ''take it away'' Not always easy.

Hope that made some sorta sense to you :)

Ettina said...

I really like your answer.
I think that understanding that a lot of what is considered necessary to be happy isn't really is important - what necessary for happiness is basically being loved and respected for who you are both by yourself and other people and doing things you find enjoyable, even if they aren't what society defines as enjoyable.

elmindreda said...

A sense of fair play coupled with enough open-mindedness to accept difference when they encounter it and realise that equal isn't always identical (many things that people consider the most enjoyable are either completely uninteresting or downright painful to me, and vice versa).

Thank you so much for writing here. Both as an autistic and disabled person and as a fledgling lecturer for psychiatric staff persons, I learn something with every new entry.