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REVOLUTIONARY COMMON SENSE LIBRARY
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LIFE BEYOND THE LABEL
Revolutionary Common Sense by Kathie Snow
www.disabilityisnatural.com
We’re so accustomed to using disability labels, we seldom consider using any other words to describe a person with a disability. But how important is the label? Does it really tell us very much about an individual with a disability? And how might life change when we choose to use other words?
Before answering these questions, let’s acknowledge that in today’s
current system, disability labels are a sociopolitical passport to most services:
no label, no services. So while I wish labels would become as extinct as dinosaurs,
they are a necessary evil within certain environments. We grievously err, however,
in using these labels in the community, with friends and neighbors; in churches,
employment settings, inclusive classrooms in public schools; and other every
day settings. So before answering the questions posed in the first paragraph,
let’s look at the errors we make in our nonchalant use of labels.
Before my son, Benjamin, entered the first grade in an inclusive classroom,
I wanted the classroom teacher to feel as comfortable as possible. At the
end of his kindergarten year, I gave the first grade teacher a book about
children with cerebral palsy (CP) and asked her to read it over the summer.
When September rolled around, I asked if she had read the book. “You bet!” she
replied. “I read it twice!”
“Do you have any questions?” I asked. “No, not really. I
know Benjamin will . . .” (she went on to describe some symptoms of cerebral
palsy). Correcting her as gently as possible, I said, “No, Benjamin doesn’t
do that.” She then listed other characteristics described in the book.
Again, I let her know that these did not apply to Benjamin. With great dismay,
I realized the teacher had learned a great deal about cerebral palsy, when
what she really need to know about was Benjamin!
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Luckily, I was able to reverse the misinformation she had acquired about
my son. But in too many cases, we let a disability label define a human
being. This rarely happens to people who do not have disability labels.
Regardless of what a person does, where he lives, or any other characteristic,
we know that “Joe Blow” is a multifaceted human being. But many people
who know what a person’s disability label is believe they “know” the
person. In turn, the person is usually seen as a collection of negative problems
instead of positive possibilities. Our prejudices run deep. When will we realize
individuals with disabilities are multifaceted, too? And when will we realize
that not every personal characteristic is a component of the disability
condition—that
a person with autism, for example, may like to be alone because that’s
part of his personality instead of part of the disability?
Like most mothers, I didn’t know anything about people with developmental
disabilities (DD) when my son was born with a disability. When the doctor said
the words “cerebral palsy,” the vision of my son as an adult was
him sitting in a manual wheelchair, not speaking, head hanging down, with a
long string of drool reaching to his sunken chest.
Where did this image come from? I had only one conscious memory of
an adult with cerebral palsy, and this was it. In my ignorance, I thought
this one image represented all people with cerebral palsy. Had I not
met other adults with cerebral palsy over the next several years—people whose only
similarity was the name of their medical diagnosis and who were very different from one
another—I probably would have continued to believe my one image of a
person with cerebral palsy applied to all people with cerebral palsy.
I was lucky. My Partners in Policymaking training (a leadership
development program for adults with disabilities and parents of
children with disabilities), which put me shoulder to shoulder
with adults with developmental disabilities helped dispel the myths
I had.
This experience, along with continued friendships with adults with DD and daily interaction with my son, enabled me to see the truth: that my perceptions were wrong. Equally important was my conscious decision to throw out the notion that a disability diagnosis could tell me much of anything about the person who was labeled. Not having preconceived ideas based on a label has been an unbelievably freeing experience. It has truly allowed me to see the person—not the disability—first. And it’s also allowed me to shed most preconceptions about “the homeless,” “seniors,” “special ed directors,” and many others who have one label or another.
Let’s look at just a few of the ways our careless use of labels can harm
people with disabilities. An IEP team decides placement of a child based solely
on the child’s disability label. A parent doesn’t believe her child
could participate in [fill in the blank] because of the child’s disability.
A classroom teacher says, “No way!” when asked to include a child
labeled with [whatever disability] in her regular ed classroom. A Sunday school
teacher insists a child with a particular disability must be in the nursery
instead of the primary grades class. A park and rec program directs a person
with a disability to a “special (segregated) program.” An
employer or a voc-rehab/employment counselor believes a person
with this or that disability cannot be successfully employed.
These are, without a doubt, prejudicial actions: individuals
have been prejudged based on a disability label. Worse than the
prejudicial beliefs of others, however, is when a child or an
adult believes what others say about her, based on the label
that’s been assigned. Whether, for example, it’s the
seemingly benign, “Girls with CP can’t take ballet,” to the
crueler, “Women with Down syndrome will never get married,” preconceived
beliefs can become self-fulfilling prophecies. In the process, they destroy
a person’s hopes, dreams, and self-confidence. And these
beliefs are a bigger barrier to success than the actual disability!
Most of us recognize the dangers of telling a child he’s stupid, that
he can’t learn to do this or that, or any other soul-crushing
insult. Can we not also recognize these dangers are the same
or worse when it comes to disability-related language and presumptions
based on a label?
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I’m not implying that we pretend a person doesn’t have a disability.
When my son was three, he learned to say, “I have cerebral palsy,” so
he could speak for himself when someone asked why he used a walker. I am suggesting,
however, that we remove our own prejudices based on a disability label. When
we do, we’ll never be guilty of inflicting life-long injuries to a person’s
heart and mind.
There are many ways to move beyond the disability label.
And the actions we take will make a difference not only in
the lives of people with disabilities, but also in how they’re perceived by society. We truly can—in small
ways and large—change the world by helping change attitudes
and perceptions!
The first step is to limit our use of disability
labels. Consider that people with other health conditions
routinely limit the use of their labels. A woman
with cancer or diabetes, for example, usually doesn’t feel compelled
to tell every Tom, Dick, and Harry about her condition! It’s personal
information that is no one’s business! Mary limits conversations about
her condition to her physician, other health professionals, and a very few
others on a “need to know” basis.
Mary does this to protect her privacy and her dignity—to safeguard against
others expressing pity or other negative reactions. And if Mary’s
condition creates a difference in her appearance which generates
curiosity in others, she is under no obligation
to satisfy this curiosity. She may, under certain circumstances, choose
to educate an inquisitive person, but she is also perfectly
justified in ignoring insensitive or rude comments and stares.
Pregnant women are all too familiar with this
issue. There are people among us who somehow
feel a pregnant belly is public property! These
strangers feel no compunction about wanting to
touch a women’s abdomen, commenting about
whether she’s carrying the baby “high” or “low,” and
expressing other personal opinions.
People with disabilities are also frequently
seen as public property! And many of us feel
obligated to “explain” an individual’s disability
to strangers or casual acquaintances in response to a stare or a comment. Our “explanations” sometimes
reveal very personal details. Not only is this unnecessary, but it’s
a demeaning invasion of privacy. It is no one’s business why or how a
person looks, behaves, speaks, or anything else! (What has happened to good
manners?) You’re perfectly justified in ignoring nosey people. Alternatively,
a stranger may ask a personal question in a very polite way. In either case—a
rude or polite inquiry—you may choose to educate or use humor. If you
decide to educate the curious person, do so in a way that focuses on the condition
itself, not on the individual you’re with. (See the “Humor to the
Rescue: What Do You Say When...?” article for humorous
strategies which can help diffuse uncomfortable situations.)
Limiting our use of disability labels with
strangers is just the tip of the iceberg, however.
The slings and arrows of strangers aren’t nearly as
harmful as those delivered by family members and others who
are dear to the hearts of people with disabilities.
Think of the numerous times a person with a disability
hears others talk about him and his diagnosis. Too many
of us talk about a child in front of him, as if he’s not even there! Parents may begin doing this when the child is
very young, before he can understand. But we’re unaware that at some
point, a child does understand our words (even if he’s not yet speaking
himself). Sadly, this becomes such a common occurrence that when the child
grows up, he continues to endure this horrific behavior when it’s
practiced by his parents, teachers, service providers, and
others.
Do you routinely talk to others about
your spouse’s body parts in front
of him or her? Would you ever talk to your neighbor about your 14-year-old
daughter’s breast development in front of your daughter? Do you regularly
discuss your supervisor’s hair loss during Monday morning staff meetings?
If you agree that these examples represent rudeness and insensitivity, then
isn’t doing the same thing to people with disabilities rude and insensitive?
The solution to this particular dilemma is easy: just remember the good manners
your mama taught you, including the tried and true, “Treat
others the way you want to be treated.”
We think in words: words shape—as well as express—our feelings
and beliefs. Just as insulting words used to describe a person (such as stupid)
can become a self-fulfilling prophecy, they can also reinforce and cement a
belief in our own minds. Thus, if you tell a child he’s
stupid enough times, your perception becomes fixed and the
child may never rise above this descriptor in your mind.
I believe the same thing happens
with disability labels. When parents
and professionals constantly use
the disability label and/or routinely
connect the label with the person
verbally or in the mind, the perceived
limitations and/or negative attributes
of the disability also become fixed in our minds.
A major effort must be made to erase this image—but it can be done.
Jenny was firm in her beliefs about the limitations (many) and the
potential for success (minuscule) of her
14-year-old daughter with autism. After attending one of my presentations
and after personal conversations between the two of us, Jenny began
to see her daughter in a different light. “My gosh!” she
exclaimed. “I realize that every time I looked at Kate, it was like the
word ‘autism’ was tattooed on her forehead. I only saw her that
way!” This painful but enlightening revelation caused Jenny to reframe
Kate as, first and foremost, a 14-year-old budding young woman. And with this
revelation, Kate’s life (and Jenny’s) changed overnight.
Jenny began treating Kate like
a 14-year-old. As a result, Kate
began exhibiting many “grown-up” characteristics (responsibility, being able to
say home alone for short periods of time for the first time in her life, and
more). Kate also demonstrated some typical teenage traits (wanting to get her
ears pierced, highlight her hair, and more). Jenny resolved to remove the word “autism” from
her vocabulary and her mind!
Jenny and many others are discovering
that what’s important about a person
is not the label, but who the person really is! Once Jenny quit thinking about
Kate’s label all the time, she was able to see beyond the label to the “real
girl.”
When we routinely use a person’s label, we frequently do so with the
intention of communicating what the person’s needs are. But this effort
can backfire in a big way! A label can be the genesis of a range of unintended
and unfortunate reactions—including (but not limited
to) pity, prejudice, misinformation, and/or confusion.
How many parents have heard, “Oh, I’m so sorry,” after telling
someone the label of their child’s disability? How many children with
disabilities have been automatically rejected for placement in a regular ed
classroom because of the label? And how many people have assumed (incorrectly)
they knew what a person needed simply because they knew the label? There are
deeply-rooted myths that accompany labels. And many parents and professionals—not
to mention society-at-large—believe these. Here are just
a few of these myths:
• Kids with autism don’t make eye contact.
• People with Down syndrome are always happy.
• Children with mental health labels come from dysfunctional families.
A description of the person’s actual and individual needs is far more
important, more accurate, and more respectful than a label. And these needs
can only be determined by knowing the person well, and by seeing the person
through clear eyes, instead of looking through the lens of the label.
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How do we go about changing our thinking and our language? First, stop using a person’s label except in the very narrow confines of the service system (including special ed services). Even there, use the label only as the initial passport to services. In an IEP meeting, for example, use the label only if it’s absolutely necessary for paperwork. But while talking about placement or anything else, the discussion should focus on the person’s needs. It may be helpful (in a team meeting or in other circumstances) to state your intentions. I could say, “Benjamin’s official diagnosis is cerebral palsy. But from here on, let’s focus on his specific needs, not on the disability label.”
What if someone persists
in mentioning the label,
as in, “But we know kids
with cerebral palsy [blah, blah, blah].”? I could deliver a friendly reminder,
such as, “What’s important to remember is that Benjamin has needs
that are specific to him, irrespective of the general knowledge of his medical
diagnosis.” If you’re a person with a disability,
make a similar statement about yourself to keep people focused
on your needs instead of your label.
If you’re a professional, consider what changes you could make in forms,
in meetings, and how you serve people, so the focus is on a person’s needs rather the disability diagnosis. To stay within rules and regulations, you may
still need to “categorize” a person by the label on official documentation,
but you can stop using the diagnosis after that point and concentrate on the
person’s needs. (But what would it take to change official policy so that
people could be served based on needs instead of disability categories? Let’s
live on the edge!)
Change has to first
take place in our hearts
and minds, as in Jenny’s situation.
Quit thinking of your child or a person you work with in terms of the label.
Just take the word out of your vocabulary altogether! Too many of us are stuck
in the rut of negatives. For example, we think about what a child will never
do or be, based solely on the label, as in: “Children with [fill in the
blank] will never go to college.” Such thinking not only clouds our minds,
but also severely limits a person’s opportunities for success! How
dare we do this? And why should we believe the dire predictions we’ve heard?
If you don’t believe in the absolute accuracy of psychic hotlines, you
shouldn’t accept professional prognostications as absolute
fact either!
What can happen
when you delete
disability labels
from your consciousness
and focus on a person’s needs, as well as her gifts, talents, and dreams? You’ll
free yourself and people with disabilities from “negatives” and “problems,” as
well as perceived limitations. You’ll see the real person
before the disability condition.
You’ll see unlimited possibilities rather than an uncertain future, for
anything is possible when we open our minds! Instead of thinking a person with
a disability can’t do this or that; you’ll consider how a person
can do [whatever] once her needs are met and accommodations are provided. Instead
of focusing on a person’s perceived “deficits,” you’ll
tune in to his interests, hopes, and dreams. And this new way
of thinking will lead to dignity, freedom, and success.
In our home,
we seldom mention
Benjamin’s disability. Instead, we focus
on his dream of being an actor. This has led to Benj taking acting classes and
performing in a children’s theater (he was great as the Wizard in “The
Wizard of Oz”)!
In the
real life
setting
of the community,
focusing on a person’s interests
and needs, instead of the label, can lead to inclusion and community! If, for
example, we get past the autism label and recognize that Tony has an interest
in art, we will no longer believe he can’t participate in community art
classes. Instead, we’ll figure out how Tony can participate, and we’ll
do whatever
it takes to ensure his success. And as Tony’s parents enroll
him in the class, they won’t need to tell the teacher or students, “Tony
has autism,” for they’ll know this might result in prejudice and
exclusion. Instead, they’ll share Tony’s strengths and interests,
along with how his needs can be accommodated and supported. If someone asks “What’s
wrong with him?” or “Why doesn’t he talk?”, Tony or his
parents can describe some of the symptoms of autism, while also sharing Tony’s
personal similarities with other budding artists.
In addition,
thinking beyond
the label will
help us focus on what’s really
important, and our energies will be spent supporting a person’s interests
and needs instead of trying to remedy perceived deficits. For example, we may
decide what Christine really
needs is a power wheelchair so she can play with
other kids at recess and make friends—and get on with the business of living—instead
of endless hours of therapy focused on making her walk.
It’s impossible to predict all of the many wonderful changes that can occur
when we move beyond disability labels. (Let me know about the changes that occur
in your
life.) But it’s happening—and all across the country people
with disabilities and their families are living real lives for the first time
ever! When we throw labels out the window (using them only in limited arenas,
if at all), and focus on a person’s interest, desires, and needs, we’ll
truly know that people with disabilities are more like people without disabilities
than different. Isn’t it time to embrace this belief? Isn’t it time
to move beyond labels? Isn’t it time to free people with disabilities from
the shackles of prejudice and discrimination? And isn’t
it time to recognize that individuals with disabilities never
asked to be labeled?
What
would
you want if
you were the
one with a
disability
label? The
answer to living
beyond the label is
as simple as that.
©2002-06 Kathie Snow, www.disabilityisnatural.com. Clip art from www.clipartinc.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
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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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