Mouth asks,

What about guardianships?


Guardianships are as big a violation of person's civil rights as having that person committed.

It's not like you're just a few rights short of full citizenship. Somebody else controls your life, as if you're a child. But they do things with you that we wouldn't do to kids.



an interview with Dohn Hoyle
by Josie Byzek


This interview first appeared in Mouth magazine #45 in November1997





Dohn Hoyle is President of the Washtenaw Association for Community Advocacy and a frequent speaker at Partners in Policymaking forums. He can be reached at Washtenaw ACA, 1100 North Main Street, Ann Arbor, Michigan 48104.

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Don't guardians look out for other people's rights?






Guardians are not angels.

You think of a guardian as someone who's there to guard, to protect someone else. In fact, guardianship originated as a way to protect the property of a person, not to protect the person himself. In old English law, guardianships were established to guard the rights of someone else to inherit the lands later. People who were under age, or "feeble minded," or gamblers, or drunkards, were put under guardianships so they couldn't squander the inheritance.
When you have a guardian, you can be deprived of your constitutional rights -- of your life, liberty, and your opportunity to pursue your happiness. Even so, very few guardianship proceedings even provide due process. You don't get a jury, and you're not even alleged to have committed a crime. But you can still be incarcerated. It could be in a group home, or in an institution. But for sure it's not going to be a place you'd choose for yourself.

A guardian is not just there to guard us, like a guardian angel. The guardian is a substitute decision-maker who's usually appointed because some professional says you can't give informed consent, or aren't competent to do something or another. It's foisted on parents a lot.
Legal people tell me that when a guardian decides that someone is going to work in a sheltered workshop, and that person earns money working there but the guardian decides how that money is spent -- at the minimum that's peonage. And it could very well be considered to be slavery.
It looks like we're finally going to see some lawsuits along those lines. If a person never gets the benefits of their earnings, that's very much akin to slavery..

But doesn't a guardian look out for your best interests?

There are guardians who have wards they have never met. There are people who are guardians for 400, 500 people.

Well, if you and I only did what was in our own best interests, we would lead very dull lives. We wouldn't get to watch mindless television that makes us laugh. We'd be brushing our teeth even when we hadn't eaten anything. We'd be eating and exercising sensibly all the time. For some people it would mean they'd never buy a lottery ticket, never take a drink. We'd never drive a car too fast or buy something we really didn't need.
For people with disabilities we have I-Teams, interdisciplinary teams, with a doctor, a psychiatrist, and all these people who sit around and decide what you should do in your life.

I have Crohn's disease. I trust my doctor. He's an internist. We used to race motorcycles together. I never ask my doctor, 'What kind of a job do you think I ought to have?' or 'Where do you think I should live?' I'd never ask those questions of my doctor.
But if my doctor were my court-appointed guardian, he would decide what's in my best interest. He could decide that I'm not within five pounds of my ideal body weight and put me on a diet. I'd only have one helping at mealtimes while everyone else gets seconds and dessert.
Now if I act out about that and throw tantrums, the staff would put a behavioral plan on me. If I keep acting out, I can be sent to a more restrictive setting.

So some people don't benefit from guardianships...

If you look at who recommends guardians, you can start to determine who benefits from it.

Let's say you are a professional, and you are doing programming, and you want people to come to your work activity program. Would you find it easier to deal with a guardian you seldom see, but who can sign papers for you, or with the person herself?
Maybe the person has poor speech, or no speech, and you have to interpret her behavior for its meaning. Or maybe the person might object to something you're doing.
Would you rather send the papers to the guardian and have them signed, or have to persuade the individual to do what you want?
It's easier, it's simpler, it's administratively more convenient for professionals to deal with guardians than it is for them to deal with the individual.

Can a person break free from this system?

What people do in many circumstances is run away -- become labeled as a runner. If you do manage to get away, you're homeless. But they usually catch you. Your 'running behavior' is never interpreted as a communication of, 'I don't want to be here.' Now that you're labeled as a runner, they start a behavioral program. They'll give you one-on-one intervention, or tighter supervision, to prevent you from running again. Basically, your life will get worse.

If you don't run? If you go to your planning meeting and say, for instance, that you don't want to go to their sheltered workshop? They're going to say, 'Well, we can't afford extra staff in the group home when you're supposed to be out during the day in the program. When you get good enough at your job, and show us you're ready, then maybe you'll get a community job.'
What we know from the data is that most people would have to live to age 138 before they get out of a sheltered workshop. There is no exit.
Very few people get out by demonstrating their productivity. If you do get good at productivity, do you think the sheltered workshop wants to lose you? They have contracts to fulfill!
If you say flat out at one of those meetings that you want to leave, they'll all smile and say, 'That's what we're all working towards.' If you say you don't like the group home either, now you look like a real malcontent.
You don't like the program that they provide? You don't like all their good efforts to make this a successful program for you? Think who you're talking to! You're impugning their professional integrity. How are they going to hear that? They're not. You're saying that their careers are a sham.
They're making their living off the backs of people with disabilities. They can't let the people be in charge of their own lives.

So a guardianship can go bad?

Absolutely. Think about someone who requires hands-on care, including for the most intimate kinds of personal hygiene. The guardian sends him to a group home. He starts off living with five people, or more, whom he doesn't know and didn't choose. He even ends up with a roommate that wasn't of his choosing.
Every day, staff comes in that he may not like. He's under that staff person's thumb, and that person even touches him to provide personal hygiene. It's even worse, according to people who have been in that situation, when that staff person doesn't like you.

The guardian puts you in that place, sends the money, signs the papers, and there you are. It's saying that the person is less than an adult, or less than human, I don't know which.
This is a process we go through with kids. We understand that it's a stage, and we want them to gain skills and capacities, to take increasing responsibility. Yes, kids do things they don't want to do, for their own good. Not because they have an IQ of a certain number, or this disability or that one. And it's going to end, and they know it's going to end. I have a 21-year-old daughter and a 19-year-old son. The amount of authority and power I have over them changes as they grow. I had to set curfews when my daughter was 13 which were a whole lot different by the time she was 17. The power shifted.

Can't you fight it in court?

The court that appointed the guardian? Do you think the court is going to say, 'Oops! I was wrong when I did that before?'
Remember how the court system works, on precedents and based on previous decisions. If they have a finding in their records that you are incompetent, you can tell the probate judge, 'I don't think I was provided with due process. I lost my life, liberty, and my pursuit of happiness.'
Then the judge can say, 'I have a legal finding here on record that you are not a competent person, and therefore in need of a guardian. You haven't demonstrated that you can live in the community on your own, or work.'
You say, 'But the guardian never gave me the opportunity to show that I could.'
The judge says, 'I don't see any professionals up here telling me that you improved since the finding.'
Case closed.

Everyone in the Michigan Mental Health system is entitled to person-centered planning, where they choose who helps them plan and they exclude anyone they don't want there. We implemented that and it turns out that somehow nobody invites psychologists, nutritionists, or dietitians to their planning.
Go figure.

And then you told a story about a Tigers game...

Time out for a Tigers game, actually. In one of our state institutions, before we managed to close it, a woman had been given [punished with] a time out for something she did the night before. There had been a field trip to a Detroit Tigers ball game. Staff knew she didn't like being outside at night, or crowds, or hot dogs, or any of that. But because the staff had a chance to go, and some guardian signed the field trip form, she was dragged out to the game, and the staff had a good time.
She didn't want to go. Apparently her behavior there was horrible. She tried to put her arms across the door to keep them from taking her. But they had the guardian's authority. And the next day, she paid for her behavior in the time out room. Her guardian probably thought, 'Field trips are a good thing, and getting out in the community is a good thing.' It seemed innocent.
Another woman had an operation. The hospital had problems, and we got a phone call. We didn't know her, but we went down to try to comfort her. She was terrified.
We tried to find out what the operation was for, but they couldn't tell us because of confidentiality. The doctor had never bothered talking with her because he had all the releases signed by the guardian. She was dragged off screaming, to the operating room. She came out of the anesthesia still screaming. She didn't know what had happened to her.
Guardianship removed any obligation of that doctor to have to talk to his patient. That's the law, but it's poor bedside manners.

Contents copyright 1997, Free Hand Press, Inc.



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