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REVOLUTIONARY COMMON SENSE LIBRARY
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TAKE A WALK IN THEIR SHOES
Revolutionary Common Sense by Kathie Snow
www.disabilityisnatural.com
Perhaps most (if not all) of the problems in the world could be solved if we understood each other better. What might happen if people of different nations, different religions, and different ethnic groups could walk in each others’ shoes? Would world peace become a reality? Well, you and I may not be able to change the world overnight, but we can work miracles closer to home by trying to walk in the shoes of the people with disabilities in our lives.
No matter what our relationship with a person with a disability—whether
we’re a family member, friend, educator, or professional—the ways
we think and act have a powerful effect on that person. Most of us want “the
best” for this person, which frequently means we do a great many things
to or for the person. So what could be wrong with that? Lots.
This scenario reflects two faulty and dangerous beliefs: (1) the person
is Not-Okay (because of the disability) and (2) the person doesn’t
know what’s best for himself (is incompetent), but someone
else (parent, friend, educator, or professional) does. Both of these perceptions
are paternalistic, and they lead to an unequal relationship in which
two people assume opposite roles: competent/incompetent, powerful/powerless,
and so forth.
Before deciding to do anything to/for a person—and/or the family, in
some cases—let’s remember that services, treatments, interventions,
and so forth, are options (choices), not mandates. State and federal laws do
mandate that certain services be offered to people with disabilities, but there
is no mandate that people must accept and use the services, and we seem to
forget this on a regular basis! So before doing anything to/for a person, the
person/family needs to decide if the service is wanted and/or needed. And the
first step in that process is ensuring the person/family is given a boatload
of information about the service, including the pros and cons. A service/treatment
may, on the surface, seem beneficial. But there may also be dangers, including:
segregation and isolation, creating dependency on the system, stripping a person/family
of autonomy and self-determination, turning the person into a “patient,” and
more.
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Next, the person (or family, in some cases) needs to be asked if she wants the service. People with disabilities and families always have the right to say no, and saying no to one service must not jeopardize the right to use other services, now or in the future. Professionals can be most helpful if they learn to ask, “Do you want this service?” instead of assuming and/or insisting a person/family needs or will use the service.
It’s also important for individuals and families to learn as much as
they can about the service, on their own, and by talking with others who have
used the service. In other words, they need to get “all sides of the
story.” Further, it’s crucial to anticipate the short- and long-term
outcomes of using the service. Again, we may mistakenly assume a service is
appropriate, helpful, or beneficial, simply because it’s offered, when
it may actually have harmful outcomes or negative consequences!
Whether thinking about the current services a person is receiving, or services
which may be considered for the future, we can ask, “Is this needed,
wanted, and/or appropriate?” Simultaneously, we can do whatever it
takes to learn how a service may impact a person’s life. Oh, what
we can learn when we ask questions and really listen to the person! We
can also try to walk in his shoes, and use our fertile imaginations in
an attempt to understand what his experiences are really like.
When my son, Benjamin, was diagnosed with cerebral palsy at the age of four
months, I wedded him to intensive therapies. It’s what “everyone” said
he needed and I believed it at the time. I dutifully took him to physical
(PT), occupational (OT), and speech (SP) therapies several days each week.
During one PT session when Benj was about two, the therapist continued an “exercise” she
had been working on for a few weeks. The goal was to “improve” Benjamin’s
posture. “Tina” sat Benj on a small bench, positioning his feet
flat on the floor and the palms of his hands flat on the bench, next to his
thighs. When his body was so arranged, his head and shoulders drooped forward.
This was the “problem.” The purpose of this exercise was to enable
Benjamin to hold his feet flat on the floor, keeping his knees and hips in
a 90 degree angle, his palms flat on the bench, and his shoulders and head
erect. So Tina sat behind Benj, pulled his shoulders back, and his head practically
snapped to attention. Simultaneously, however, Benj’s palms rose off
the bench.
“No, no,” Tina said, as she repositioned Benjamin’s palms flat
on the bench. “Let’s do it again!” Each time she pulled back
on his shoulders, his head moved into the “proper” position, but
his palms lifted off the bench. So Tina pushed his hands back down and tried
again—and again and again and again. It wasn’t working, but she didn’t
give up! Benj was becoming agitated—tired of being pushed and pulled. Tina
was tired of Benj “not cooperating.” Benj, from my perspective, was
trying as hard as he could, and I was irritated and tired of watching Tina manipulate
my son’s little body! I politely suggested she do something else.
As a “good therapy mom” at the time, I always tried to learn how
to do what the therapists did, so I could do it at home. I was curious why
this exercise didn’t seem to work, so that night I tried it on myself.
I sat on the piano bench with my feet flat on the floor, my knees and hips
bent at 90 degrees, and attempted to place my palms flat on the bench next
to my thighs, while holding my head and shoulders straight. Guess what? I couldn’t
do it! My palms came up off the bench, too.
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What was going on here? I asked my husband, Mark, and my daughter, Emily, to try it. They could do it! I thought I must be doing something wrong, so I did it again and still no luck! Then four-year-old Emily said (with the wisdom of a child), “Mommy, your arms are too short, that’s all!” And she was right! My arms simply weren’t long enough, and the same was true of Benj. Perhaps the therapist had been taught that the “average” person could assume the position. But who’s average?
At the next therapy session, I shared my discovery with Tina. She was skeptical
until I sat on the bench and showed her. Tina stood with her mouth agape.
My demonstration seemed to rattle her world—what other therapeutic
principles might also be erroneous? For the first time (but not the last),
I wondered if therapists and other professionals routinely tested their
work on themselves. Did they question if their methods were appropriate
for everyone or was the one-size-fits-all mentality the norm?
Had I not tried to walk in Benj’s shoes, I may have allowed Tina to continue
her attempts to manipulate his body into a position he could never achieve.
And the “failure” of this futile exercise would have landed squarely
on little Benj—not on the therapist’s erroneous assumption that
this was an appropriate technique for my son.
Since that experience, I have diligently tried to always see things through
Benjamin’s eyes, knowing that even my best attempts cannot come close
to his real-life experiences. When I’m unable to replicate what he’s
experiencing or see things clearly from his perspective, I ask him to help
me understand. And I try to really hear what he’s telling me. I listen
to his words, as well as his feelings and his behavior—what’s
behind his words. We all communicate in many ways.
Back to Benjamin’s therapy experience, how many similar situations occur
to other children and adults with disabilities each day? How many times have
professionals, parents, educators, medical personnel, or others unintentionally
caused emotional or physical distress or harm to children and adults with developmental
disabilities while providing “help”? How many individuals have
been described as failures, incompetent, uncooperative, low-functioning, disruptive,
manipulative, inappropriate, subnormal, or any other labels because they don’t
meet an artificial standard, a developmental milestone, or some other counterfeit
measure of achievement? Who among us—regardless of position, title, training,
or expertise—has been awarded the power to judge?
Once we chose to question what was being done to/for Benjamin, my husband and
I were better able to see what was really important: our son’s spirit.
We made changes—in our attitudes, in our actions, in the services
our son received, and more—even though some told us our decisions
were very wrong, according to conventional wisdom. Many of us are learning,
however, that conventional wisdom isn’t concerned with a person’s
heart and mind. Therefore, we must be.
Isn’t it important to carefully consider how our actions affect the person?
We can start by looking inside ourselves to identify our motives: do our actions
benefit ourselves or the person with a disability? We may truly believe that
everything we do to/for a person is for his benefit. But deep introspection
may prove us wrong.
Parents, for example, may work diligently to “improve” a child’s
appearance, behavior, or abilities because of their own embarrassment or discomfort.
In other words, a child’s “problem” may actually be the parents’ problem!
The same might be true for educators or other professionals. If a student isn’t
doing/behaving/looking “right,” an educator may feel she will look
bad—the “guilt by association” rationale. The belief that
we could be judged by the actions/appearance of another person may lead us
to do things that just aren’t right for the person.
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The only solution to this dilemma is to not care what others think! How can we risk harm to another just so we won’t look bad? Is how we appear to others more important than the hearts and minds of the people with disabilities in our lives? How might you feel if your mate was embarrassed by your size, hair (or lack thereof), or some other characteristic, and this resulted in your mate constantly trying to do things to/for you to solve “your problem”?
Many of us may do to others what we do to ourselves. Thus, if we’re very
judgmental of ourselves, we tend to judge others, and we believe others are
always on the look-out to judge us. Teenagers, for example, are often harsh
self-critics, fretting over the appearance of their hair, clothes, make-up,
etc. In turn, they worry about what others—even strangers—think
about their appearance. And, as the wheel of criticism goes around, they tend
to look at others with a sharp eye. Hopefully, most emerge from this cocoon
of insecurity.
Moving beyond the personal milieu, we may feel obligated to do certain things
to/for a person within the context of our positions. Taking certain actions
may be mandatory within the realm of services, bureaucratic policies, entitlements,
and so forth. Thus, if a professional doesn’t do this-or-that, he
may feel he’s not doing his job correctly.
For example, when Benj was in elementary school, I asked the occupational therapist
to help him with keyboard skills in the classroom. In a huff, she replied, “That’s
not therapy!” She believed she wouldn’t be “doing her
job” if she didn’t pull him out of class and make him stack
blocks. It didn’t seem to matter to her that keyboard skills were
what Benjamin really needed.
Services, treatments, policies, and entitlements are supposed to meet the needs
of people. If these are not helping and are, in fact, causing harm and/or
are getting in the way of a person’s success, a big reality check
is in order.
We can ponder whether we’re really doing what’s right for a person
or if we’re simply “following the rules.” The determination
of what’s right rests with the person, first, and his family, second—nowhere
else! How would we feel if others decided what was right for us while disregarding
our wants, needs, feelings, hopes, and desires?
The belief that we (or others) know what’s best for a person drives many
of our actions. Put under a microscope, this notion seems to reveal more about
ourselves than the person. If we take a peek through the lens, we may see arrogance
or superiority within ourselves, coupled with the belief that the person is
pitiful, incompetent, unable, or “not-okay.” What we learn about
ourselves through introspection may be a difficult pill to swallow, but it
can help us become more caring human beings.
We may be so hung up on disability labels and the value of their accoutrements
(treatments, services, and so forth), that we no longer see the real person
and what his life is really like. Trying to walk in someone else’s
shoes can help shred the mask of disability.
Before doing something
to/for a person, let’s do it to/for ourselves, whenever possible. For
example, a therapist can attach electrodes to her own skin and try to imagine
what this feels like to an eight-year-old child who has cerebral palsy. She
can then imagine what it feels like when she cries at the discomfort, pain,
or indignity and no one listens to her cries. What other real-life activities
can we do to/for ourselves (or have another person do to/for us) before making
the decision to do these to/for a person with a disability?
When it’s not possible to replicate something, we can use our imaginations.
Imagine losing your ability to communicate orally. You want a communication
device, but others don’t agree. They feel you need therapy, and that
(1) you don’t have the ability to use a device and/or (2) providing you
with a communication device means (a) they’ll have to give up on the
belief that you’ll ever learn to speak and/or (b) you’ll become
dependent on the device and won’t try to speak. But you don’t care
about therapy; you simply want an effective means to communicate!
Here’s another scenario: imagine you’re told where you can/can’t
live or work based on someone else’s opinions of your abilities and competence.
(Let’s never forget that what is said about people with disabilities,
as well as the results of assessments and tests, are only opinions—not
facts.) See yourself with little or no control over your life, while other
people (who may not know you, who may be younger than you, and/or who aren’t
really a part of your life) have infinite power and control over you.
In the final analysis, it seems there are two practices which can help us do
the right thing. First, common sense and basic respect dictate that we
listen to the words and messages from children and adults with disabilities.
Second, being empathetic—walking in someone else’s shoes—trying
to see things from his perspective—can be the light that guides our
actions. It can be this simple: before doing something to/for a person
with a disability, ask yourself, “What would I want if it were me?"
©2002-06 Kathie Snow, www.disabilityisnatural.com. Permission is granted for non-commercial use of this article: you may print this web page and photocopy it to share with others. Click here to download the PDF handout version of the article. As a courtesy, please tell me (kathie@disabilityisnatural.com) how/when you use it. Do not violate copyright laws: request permission before reprinting or republishing in newsletters, on websites, or in other media. Clip art from Adobe In-Design.
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Our words reflect the way we think, so let's get rid of descriptors like "handicapped, physically disabled, mentally retarded, learning disabled" and other words that focus on the condition instead of the person. People First Language promotes dignity and respect for all!
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