Revolutionary Common Sense by Kathie Snow,
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 are not 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.” Then 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 announcement during 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 disabilities. 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 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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