It was hard for him.
I was even harder for the staff.
And harder still for his parents.
But, oh my, was it worth it.
A discussion was happening about a fellow with an intellectual disability, regarding his future, in which a fairly major decision needed to be made. It was a decision that would alter the course of his life. Everyone was really concerned and everyone really cared about him and his well being. When this made it's way to my table my first question was, of course, "Well, what does he think about it?"
No one had an answer.
When pressed people were able to tell me what they thought he might think, but no one actually knew. I sensed embarrassment from everyone involved, we all do know better. But it's easy isn't it, to just subtly, and without meaning to, and certainly without malice, simply take control of another's life. And it's easy for people with disabilities to get used to riding the passenger seat as they journey from year to year.
So, the first decision was made.
Then the second.
It was first decided to ask him.
The second decision, was, simply, to listen to him.
Everyone expressed agreement amid a lot of concerns. Parents were worried he'd make the wrong decision. Staff were worried that he'd make a wrong decision. The clinician was worried the he'd make either of those two decisions when obviously a third option was the better choice. They all saw his life clearly and saw where he should be going. But each, if they were moving player pieces would be playing a different game.
But worried or not, he was asked.
And now he was worried. He knew what everyone wanted him to do, he knew everyone was at cross purposes but he knew that whatever he did, there would be those who disapproved and those who thought he did wrong and those who, maybe even, would be upset.
He tried to opt out.
He tried to get the team to decide.
It was really, really, really, and I need to say again, really, hard for people to stand back. Give information, not opinions, and then only if asked.
On his own.
Perhaps the very first decision he's ever made free of pressure, free of attempts to influence, free of any kind of influence.
It was hard for him.
And he did cry.
Today he decided.
He chose a 4th option that no one had talked about. He chose something that fit him like a well tailored suit. He chose something that was so uniquely him that only he would have been able to see it hiding amongst the options offered to him.
Not everyone is completely happy.
But he is.
And he's proud too.
The only thing that everyone agreed on was that it was time.
Time for him to speak freely and take control.
He is 62 years old.
I was right with you when you asked what he thought.
I was right with you when you talked about how hard it was - for him, for everyone.
I was right with you, and cheering, when you told us he found an option that was perfect for him.
But that last line?
... it has me weeping.
Who ARE we that we can make someone wait SO LONG to be asked what he would like?
When I Got to your last line, I, too, was shocked -- and also instantly reminded of my cousin, Bobbie, who has an intellectual disability and whose story could be this man's. She was born in the 1940s and kept at home, never got to go to school, never did any kind of work, just was kind of an attachment to her mother.
And then, when Bobbie was about 60, her mother died. So her sister, who lived 50 miles away, came to get her to live with her.
Bobbie lasted three days at her sister's home. Then she announced, "This isn't where I want to live. My home is in Fort Worth. I'm going back!" And to the shock of a lot of people, she picked up and found a nice apartment and moved back on her own. But her sister didn't fight her on it, bless her heart!
And then she found friends, and she learned to read and write and opened her own bank account, and she got to travel, and she decided how to decorate her apartment, and how to handle the money her daddy had left her ("Daddy said to always keep it in blue chip stocks, so that's what I'm doing!"), and what to do when, and never regretted what she'd done, and was happier than I've ever seen in her life. The first time I saw her in her new apartment, I cried for joy -- I'd known Bobbie all my life, but this was the first time she wasn't just a pale shadow of the person she should have been. I'd never really known her before -- and I *love* who she is now!
It's awful how many lives have been wasted by never being given a chance, isn't it? I am as happy for this man as I am for Bobbie, and I'll bet he, too, will never, ever regret his decision because *he* got to make it. Even though it was at least 40 years later than it should have been for him to make a decision like that!
What was the 4th option?
Very common scenario, sad to say. Other people must stand back and encourage and allow the person to make his/her own decisions. If it turns out to be the "wrong" decision, that's what learning is all about. Why should we expect people with disabilities to make "the right" decisions every time and not change their minds, or muck things up, like the rest of us do. Live and learn.
It's awful that a 62 year old man had never been able to make his own decisions about his own life...sadly, though, it's still more the "norm" than not.
My son fired his physiotherapist when he was 17 because she told him that a certain decision regarding therapy was not his to make; rather it was up to us (his parents) and the school team... He came out that day, fuming, and told me what happened. I asked him what he wanted to do about it. He told me he didn't want to see her anymore, so the next day I helped him cancel all his future appointments and he let her know that he would not be returning. He then interviewed a couple of other PT's and found one whom he felt respected him and would work well with him.
A few people were a little taken aback that he was "allowed" to fire her... My response was, "He is 17, not 7. He is more than old enough and capable of deciding what is working for him. It is HIS life, HIS body, and I will be damned if I will stand in the way of his right to have a choice."
My I work with Dr. Clarissa Kripke at UCSF. As others have said previously, this post is extremely powerful. Would it be possible to use it as part of our Supported Decision Making training? I will be conducting a Spanish SDM training soon and would love to have it translated - of course with proper attribution and will gladly share the translated document with you.
Thank you for your posts and all of the work you!
Patricia Mejia, I would love this used in anyway you choose. As long as you cite the source, I'm good. I would love to have a copy of the translated document!
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