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Revolutionary Common Sense by Kathie Snow, www.disabilityisnatural.com
What are manners? Years ago, I read a meaning-
—My teenager still sleeps with a night light.
ful deﬁnition which described manners as “making
another person comfortable.” Most of us probably try
—My wife has a big boil on her behind.
hard to have good manners, but many of us lose the art
I don’t think so! Most of us—I hope—have bet-
of manners when it comes to people with disabilities.
ter manners than to share personal information that
While I was presenting the “History of Dis-
abilities” at Idaho Partners in Policymaking, Howard
So how, in all good conscience, can we share pri-
(who is ﬁfty-something) said he wanted to share how
vate information about people who have disabilities?
individuals had been treated and talked about in the
How can we talk about them, in front of them, as if
past, based on their disability diagnoses.
they’re not there? And talking about them when they
“I have two brothers,” Howard began. “All the
present isn’t much better—that’s a form of gos-
time I was growing up, when my father introduced us,
sip, and the person isn’t there to defend himself!
he said my brothers’ names and then he always said,
Family members aren’t the only guilty parties,
‘And this is our retarded son, Howard.’ Why did he
however. Many professionals have lost their manners,
do that, Kathie? It always made me feel so bad.”
as well. After inviting me to present a seminar, some
Howard broke into shoulder-heaving sobs, as the years
meeting planners have “helpfully” warned me, “Some
and years of pain poured out. Several of us comforted
of our ‘consumers’ will be there, and they’re more
him as best we could. Resuming my presentation, I
like children.” Would the meeting planner make this
noted that years ago, many people probably believed
the seminar, when adults with
that it was appropriate to share this information with
disabilities are in the audience? Don’t think so. If a
anyone (including strangers) and perhaps they also
meeting planner feels it’s appropriate to warn me about
thought people with disabilities did not have the cog-
people with disabilities, why isn’t she also motivated to
nitive abilities to understand what was being said, so
warn me about others? As in, “Some of the parents and
they didn’t think their words would hurt.
professionals who are coming to the meeting are real
Howard’s pain was clear evidence that words—es-
duds.” Many educators routinely use negative descrip-
pecially the words used by parents and others who profess
tors about their students, both in front of the students
to care about you—
hurt very deeply and the pain
and behind their backs. Ditto for many therapists who
is long-lasting. On that day, Howard’s decades-old
shamelessly say things like, “The Down’s is coming in
pain felt as raw as it did every time Howard’s father
described his young son as “retarded.” It seems things
The loss of manners isn’t limited to our words.
would have changed over the past thirty, forty, or ﬁfty
“Janelle” recently introduced me to her 20-year-
Week in and week out, I meet parents who talk
old daughter, “Micki,” a bright and lovely young lady
about their children (regardless of the child’s age) in the
who happens to have a disability. Micki shook my hand
same way Howard’s father did! Sometimes the child is
and greeted me. In the course of casual conversation, I
present, sometimes not, when parents say things like:
asked Micki a couple of questions. She started to reply,
but Janelle jumped in and answered! Micki could speak
—He’s sixteen, but he functions like a 5-year-old.
for herself, but her mother got in the way! Why did
—She doesn’t have much “upstairs.”
Janelle do this? Was she afraid I wouldn’t understand
Would we share private information about family
her daughter? Was she afraid I would judge Micki by
members who don’t
have disabilities, like:
her words or oral abilities? Did she think her daughter
2 - The Lost Art of Manners
There are relatively few times when it’s important
to share a person’s diagnosis with others: in special ed
is incompetent? Or was she even aware
she was doing
meetings, with medical personnel, and/or with others
this? Like all parents, Janelle probably spoke for her
in the service system. Just as we wouldn’t discuss the
daughter when she was very young, and perhaps she
need for Viagra or the details about the boil on your
hasn’t realized Micki can now speak for herself. I can’t
bottom with anyone other than medical personnel, we
imagine the frustration and anger Micki must feel.
do not need to share a person’s disability diagnosis with
What’s frightening is that parents, professionals,
anyone other than a few speciﬁc people in speciﬁc cir-
educators, and service providers are supposed to be
cumstances. (And even then, there are more respectful
“on the same side” as the children and adults with dis-
ways of sharing information with others, as described
abilities they care about, serve, and/or teach. But with
in “The Problem with ‘Problem’” and other articles.)
Many people with disabilities are said to have
Our poor manners are not only rude, but they
“challenging behaviors.” Perhaps we would do well
also risk causing long-term and severe emotional pain
to look at our own behavior before judging others.
in others. Furthermore, they reinforce the disability
Is it possible these individuals may be reacting or re-
double standard: one set of rules for people without
sponding to the vicious, verbal assaults they routinely
disabilities and another set for people with
experience when they hear others talking about them?
And we wonder why inclusion, dignity, and respect
Do we think people don’t hear or understand what
for all continue to be out of our reach. Our words and
we’re saying? How arrogant and uncaring can we be?
actions set people up for exclusion.
Shouldn’t we care about how others feel? How would
How can we do better? First, using People First
Language is crucial. (See the People First Language
Third, we need to demonstrate our good manners
article at www.disabilityisnatural.com.) A person is not
by letting people with disabilities speak for themselves
her disability, thus, she is not “retarded”—she “has a
and be themselves. They are our equals! We have no
cognitive disability.” A diagnosis represents a condition
right to speak for them, unless they have asked us to do
or a characteristic; it does not deﬁne a person. And
so! In addition, to interrupt someone; to “explain” his
consider that a family member of a person who has
behavior or actions; or to “apologize” for his drooling,
cancer does not say, “She’s cancerous.” So, why do we
his speech pattern, or anything else is to rob a person
say, “He’s disabled [or retarded, autistic, or whatever].”?
of his right to be who he is! How would you feel if your
Saying, “She has cancer,” is more appropriate, as is,
husband interrupted you and said to others, “My wife
is quite the motor-mouth, isn’t she?”
Second—and just as important—we need to
The personal lives of people with disabilities
be careful about sharing information with others.
should not be part of the public domain. We have no
Howard’s father might have shared that his son was
right to speak for them, to reduce them to medical di-
“retarded” in order to “explain” his son’s behavior,
agnoses, to share their personal information, or to talk
speech, or something else. But the outcome of his
about them (in front of them or behind their backs) in
good intention was probably less than desirable: upon
ways we would never talk about ourselves, and, in the
hearing “retarded,” people most likely assumed the
process, strip them of every ounce of dignity. Have they
worst about Howard. (What terrible things we may
ever given us permission to do any of these things?
inadvertently do in our efforts to “do good”!) Once
Howard gave his permission to share his story.
that ﬁrst impression was formed, there was probably
His experiences, as well as the experiences of countless
very little Howard could do to change it. The same is
others, are continuing lessons that help me stay on top
true today when we focus on a person’s disability as
of my manners. I hope they do the same for you.
2004-07 Kathie Snow; all rights reserved. You may photocopy to share with others (in its entirety), as a handout. Please share how/when you
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