Mouth asks,
What about guardianships?Dohn SAYS
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.
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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