In a message dated 4/21/03 4:02:45 PM Pacific Daylight Time, [log in to unmask]
writes:
> ith CP), tried Feldenkrais a couple times, and it
> seemed to work well. Our insurance wouldn't pay for it, and we had to
> travel 65 miles to the nearest Feldenkrais practitioner, so she didn't
That's too bad, Kendall Maybe things have changed, check the list of teachers
in your area.
Oh, I was going to send a copy of my summary of the Smull article.
here it is
Outline of Michael Smull's article
1. Be aware of how the word choice can be empowering or destructive. We
need to have a balance between honoring choice and ensuring safety.
2. Choice brings three concepts with it: Preferences, Opportunity, and
Control.
Preferences include not only what somebody likes and dislikes, but also their
dreams and
desires.
Opportunities are the vast array of people to spend time with, or things to
do, or places to go. Preferences reflect what people want, while
opportunities reflect what's available.
Control: Control is being able to make use of the opportunities to satisfy
our preferences.
3. We need to support people in finding out what their preferences,
desires and dreams are.
What is important to the people being supported? What are their dreams, what
are their nightmares?
Many times people lack the life experiences to know what they like and what
they dislike. Many people need to have a life of their own before they can
have a dream of their own.
As people try new things, and as they age, their preferences change. In a
system that offers real choice, people are continually supported in
expressing their preferences, regardless of the severity of their disability.
.
4. Supporting choice also requires that we recognize that what we need
to know is taught by the person being supported. We have taught learned
helplessness, now we need to teach trust.
In the past we have coped with the poverty of opportunities for the people we
support by suppressing their preferences for what is absent.
We now need to teach the people we support that we can be trusted to listen
to their preferences, dreams and desires. We need to teach that whenever
possible we will assist them in getting what they want.
Teaching Choice is a poor choice of words. We are not offering choices, but
soliciting preferences, and demonstrating that staff can be trusted to honor
the preference expressed.
5. A number of people with disabilities have learned to shout with their
behavior. We need to listen to the preference that underlies these behaviors.
Once real preferences are understood and acted on, the need for "shouting
with behavior" is eliminated.
6. What people want is usually modest.
When people say we can't afford choice, they may be confusing what is
important to somebody, with what would be nice to have.
Careful planning discovers preferences that are important to each individual.
Examples may be such as which way they want to be wheeled in their chair, who
baths and dresses them.
You may find a few who have desires that cannot be met because of their
expensive tastes. Rational decisions about resource allocation may leave them
disappointed.
On the other hand, you may have a reasonable request that cannot be met
because of resource allocation problems.
7. What people don't want is as important as what they do want. People with
disabilities often have not had the choice of "voting with their feet."
Very few of us make our decisions alone, we seek other people's opinions
and then choose the advice that that agrees with what we want. We reserve the
right to make "bad" choices. People with disabilities need the same
opportunities.
What people ask for may not be what they really want. They may not be
aware of all the options available to them. They may not know about supported
living so they might ask to live in a group home if they are in an
institution now. Somebody else may ask to live alone, but further detective
work discovers that he doesn't want to live with others who have disability
labels.
Sometimes a person's disability precludes them from obtaining what they
want, and we need to dig deeper to find out what lies beneath the surface.
For instance, somebody may want to be a pilot; he loves airplanes, but can't
become a pilot, and so we got him a job at an airport.
Another man wanted to be important like his father who is a scientist,
when we looked beneath the surface, we discovered that what mattered to him
was that he be respected, and that he wear a necktie to work. We helped him
get a job in a facility that did scientific research.
8. Helping people be safe and happy requires thought and effort. We know
that there's no such thing as a risk-free life, but, don't use "choice" to
negate our obligation to keep people safe,
We had a man who liked going for walks whenever he felt like it.
Unfortunately, he thinks cars should stop for him regardless of the danger.
We dug deeper and found he would be happy in a rural setting, and found him a
place to live on a five acre Christmas tree farm where he can go for long
walks without having to cross a street.
9. Choice requires opportunities and sharing control. Many people with
disabilities have never had the life experience necessary to determine how
they really want to live. You cannot simply throw opportunities at people,
everybody needs to find their own pace -- some like to dive right in, and
others like to stick a toe in first as they want lengthy and careful
transitions. Both need the control necessary to change their minds.
As people find their choices are being honored, they want control over
those choices.
Having control is how we maintain a balance in our own lives. Control is
what allows us to try new things and discard them when they do not fit.
Sometimes people we see as having challenging behaviors are just trying
to demand control over significant parts of their lives, while others we see
as withdrawn or even compliant have just about given up hope of having
control over their lives.
Control is a complex concept. Most of us conform to large sets of
societal rules without much thought, and only remark on those few areas where
we disagree. Each of us has our own rules that we insist that those we live
with honor, and our friends expect us to honor theirs. In reciprocal
relationships, control is shared.
10. Control, Opportunities, and Preferences as developmental triplets. Most
children are given choices slowly, picking out their toy, clothes for the
day, books to read. The parents honor their child's choice and as the child
grows in their capacity, the span of control gets broader. As they grow, they
move from nearly constant supervision to doing what they want within defined
and nearly always disputed guidelines as adolescence comes.
This can be both a helpful, yet dangerous analogy to use with people with
disabilities. It is dangerous in that we are talking of supporting adults
who may have already been trapped by developmental concepts such as a mental
age.
11. Control and capacity. How much control we have, and what we have
control over, should be a function of desire and capacity. Our stereotypes of
people who have severe disabilities may cause us to overlook the capacities
that are present. Many demonstrate a much greater capacity for controlling
their own lives than they are given credit for.
Positive control is learned, and control should be coupled with a
knowledge of consequences. We need to ask what people are asking for and how
we can help them get it without putting them at unnecessary risk. It might
be supporting somebody who enjoys sitting in the sun, but since she is very
allergic to pollen, she might need to be told that the pollen level is high
and she would not enjoy the consequences of going outside.
12. Timing and opportunities: Opportunities have a developmental sequence,
people need to be offered what they're ready to try. What people are ready
for, and when they will be ready requires judgment. Many need encouragement,
an opportunity may need to be presented again and again. Judgment is required
to determine when encouragement stops and coercion starts.
Opportunities can lead to injury and judgment is again required. But
there is little growth without risk, and people need to be able to fail and
to feel hurt. Our own values influence and often control what we support. We
need to remember that the opportunities that are made available depend on the
values of those with control.
Sometimes when people live in very controlled settings, control is sought
wherever it can be found. These may really be the desire for control in other
aspects of their lives.
13. The difference between sharing control and giving control
Control is not a fixed quantity. It ebbs and flows in our relationships and
it can ebb and flow with the people we support. An agency in North Carolina
sees control as moving toward the person whenever possible but returning to
staff when the person supported has an acute episode.
People who were once seen as not competent to choose their clothes, are now
living in their own homes. We are also hearing of the people who have been
injured when someone used Choice as an excuse to not think. We need to
recognize that the people we support are the experts on what they want, while
we are their partners in helping them get it.
In our relationships we should help people grow, and remember there a dignity
to risk. At the same time, there is no dignity in serious injury. The key to
growth begins with understanding what people want today, and then helping
them find opportunities so they will know what they want tomorrow.
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I am available to do writing, editing, reporting, designing jobs, including
business cards, etc. I am also a disability rights activist.
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