During the training today I told a story that I've told a thousand times before. The story is aimed at getting people to think about privacy and about how we need to practice privacy. It's about being at an IPP (as they are called in those days) meeting and sitting with other professionals discussing the hygiene routines of a young woman, also present at the meeting. Before I could finish one of the people in the audience spoke up and asked why I hadn't done something then, why I hadn't spoken up. It's a great question and one that I'd never been asked before.
This story took place over 20 years ago and it was important for me to reflect back. As we all do, I have learned as I've gotten older. There are several things which are painfully obvious to me now but were completely obscure to me when I was younger. The older I get the less I know. However, the older I get the stuff I do know is somehow more important. Like - the meaning of respect. I didn't do anything then because I didn't really realise, yet, that it was wrong. I just went along on the assumption that we, as staff, had the right to do and say what we wanted to do and say and that people with disabilities who didn't go along with it were behaviour problems.
What also struck me though, and maybe really for the first time, when I answered her question. Was that I am so much more outspoken now, so much less likely to let things simply lie for two reasons. One is obvious. I'm older. I'm moving towards the kind of wonderful freedom that comes with that. But the other isn't quite so obvious, or may be obvious to all but me. I have much more power now than I did when I was a direct care staff. I hold a position of authority at work. I hold a position of a little renown in my field of endeavour. I have little fear of reprisal for holding opposing views.
I wonder if I do enough, or think enough about the voice of those who provide direct care. The voice of parents or the voice of staff are often discounted by those with more authority, those who 'know more.' I worry about the voice of people with disabilities. And I should do that. But aren't all voices necessary. Aren't all voices needed in order for there to be a chorus, for there to be harmony?
I'm glad I was asked the question.
Because I still have much to learn.
Still have much to realise.
And there's a lot more growing to do.
6 comments:
Yes! How could the people working at Winterbourne View not know? Well they did know and they didn’t get heard. And that’s not safe.
Dear Dave:
This is very thought provoking. I saw a little sign the other day that said, Wisdom comes with age, but sometimes age comes alone. Obviously in your case age and wisdom are a couple.
There are many instances in my own professional life where I wish I knew then what I know now. But that is the nature of the beast - we grow and develop by reflecting on and learning from our experiences.
I like your thought that direct care staff should be listened to, payed attention to. I think sometimes they get the message that what they do is not important or that what they think about something does not matter. And yet, they are the ones who know the person they support better than most, they are the ones who carry out all the policies and procedures and witness how they impact the lives of those they support. They are the ones who sometimes have to risk everything to report abuse or to advocate with or on behalf of the people they support. And yet within an agency they often have very little power.
Colleen
You've reminded me of the year -- 15 years ago now -- when I spent three days a week as direct care staff in a 2-resident group home. Two staff for each 8-hour shift took care of two adults who were among the last released from one of our state's huge institutions.
I only attended one IPP meeting (we weren't "invited," but whichever of us were on duty drew straws for 'attending the meeting for X' vs 'sitting in the waiting room with Y'.
The meeting began without introductions of the 8 people around the desk of the meeting's leader, a psychiatrist. His opening remarks didn't seem to include much beyond 'Good Morning, let's get started.'
The very next thing out of his mouth was "John Smith, Male Client." He then proceeded to enumerate the compiled remarks of staff and assorted 'consulting professionals' and 'weekly one-hour visiting therapists' and then make his recommendations for med changes.
Then the rest of the staff spoke in turn, briefly. 'John' was not invited to speak.
Here's the part where I wish I'd understood more, then, about 'John's' experience:
For the next two days his only spontaneous utterance, spoken in a voice of bleak doom, was "John Smith. Male Client."
"We live, we learn with every turn around the sun up in the sky,
my favourite prayer is the one that says: please help me love whats right in the front of my eyes,
sometimes its so hard and complicated
to see this world unjaded.
Go on let it break your heart
Go on let it break your heart
Go on let it break your heart
- wide open...."
lyrics from Joshua Kadison
known by Julia
Dave, I love the line "Aren't all voices necessary. Aren't all voices needed in order for there to be a chorus. For there to be harmony". Sometime, though, the choir needs practise!
It is extremely unfortunate that people with disabilities are oppressed within the systems that they rely upon as well as their advocates.
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