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Date: Wed, 16 Jul 2003 22:25:29 -0600
From: Disability Is Natural <[log in to unmask]>
Subject: Disabiltiy is Natural Newsletter
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Disability is Natural Announcement
http://www.disabilityisnatural.com

The Disability is Natural Free Press
Copyright July 2003 by Kathie Snow

IN THIS ISSUE:

---NEW! STICKER FUN WITH POWERFUL MESSAGES!

---"NEW WAYS OF THINKING" STORIES ADDED TO THE WEBSITE

---THE LOST ART OF MANNERS

---WE NEED YOUR PHOTOS!

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NEW! STICKER FUN WITH POWERFUL MESSAGES!

Many of you asked for them---STICKERS---now they're available! Your favorite messages---including Presume Competence, All Kids Belong, People with Disabilities are People First, Disability is Irrelevant, What a Great IDEA: Inclusion Works---and all the other messages that are currently available on T-shirts, tote bags, badges, and key rings are now on STICKERS!

Educators, parents, and others have written to us, saying they wanted to share a particular message, but didn't have the funds to purchase badges for everyone in a classroom or at a meeting. STICKERS are the perfect solution! Each sticker is approximately 2 1/2 inches in diameter, and there are 12 stickers (of the same design) per sheet, for only $3.00 per sheet.

Use your STICKERS to decorate the chests of IEP team members, or slap them on notebooks, windows, wheelchairs, briefcases, or any other surface to promote your point of view and spread good news about people with disabilities. Visit http://www.disabilityisnatural.com and check them out today!

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"NEW WAYS OF THINKING" STORIES ADDED TO THE WEBSITE

As you may know, the www.disabilityisnatural.com website includes a variety of articles on new ways of thinking and promoting positive images of individuals with disabilities. Our intention has always been to add new articles on a regular basis, and we're finally getting around to doing just that!

Concerned about BEHAVIOR ISSUES? ASSISTIVE ECHNOLOGY? INCLUSION? THE SYSTEM?
You'll find interesting and provocative articles on these subjects and more at http://www.disabilityisnatural.com. Each of the new articles can be read online, printed, and shared with others---and a PDF version is also available, already formatted as a handout. Click on the "Revolutionary Common Sense" icon and join the gentle revolution that's changing the lives of people with disabilities and their families.

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THE LOST ART OF MANNERS

What are manners? Years ago, I read a meaningful definition (and,
unfortunately, cannot remember the source) which described manners as "making another person comfortable." Most of us probably try hard to have good manners, but it seems many of us lose the art of manners when it comes to people with disabilities.

While I was presenting the "History of Disabilities" at Idaho Partners in Policymaking in April, Howard (who is probably fifty- or sixty-something) raised his hand and said he wanted to add something about how individuals had been treated and talked about in the past, based on their disability labels.

"I have two brothers," Howard began. "All the time I was growing up, when my father introduced us, he said my brothers' names and then he always said, 'And this is our retarded son, Howard.' Why did he do that, Kathie? It always made me feel so bad." Then Howard broke into shoulder-heaving sobs, as the years and years of pain poured out. Several of us comforted him as best we could. Resuming my presentation, I noted that years ago, many people probably believed that it was appropriate to share this information with anyone including strangers) and perhaps they also thought people with disabilities did not have the cognitive abilities to understand what was being said, so they didn't think their words would hurt.

Howard's pain was clear evidence that words---especially the words used by parents and others who profess to care about you---hurt very deeply and the pain is long-lasting. In Howard's case, the pain was decades old, but on that day, it felt just as raw as it did every single time Howard's father said, "My son is retarded." It seems that things would have changed over the past thirty, forty, or fifty years, but...

Week in and week out, I meet parents who talk about their children
(regardless of the child's age) in the same way Howard's father did! Sometimes the child is present, sometimes not, when parents say things like:
---My daughter is autistic.
---He's sixteen, but he functions like a 5-year-old.
---She doesn't have much "upstairs."

Would we share private information about family members who don't have disabilities? Would we ever say things like:
---My teenager still sleeps with a night light.
---My husband needs to take Viagra.
---My wife has a big boil on her behind.

I don't think so, because most of us have better manners than to share private, personal information that is no one's business!

How in the world can we, in all good conscience, share private information with others, including talking about people in front of them, as if they're not there? And talking about them when they are NOT present isn't much better---that's a form of gossip, and the person isn't there to defend himself!

Family members aren't the only guilty parties, however. Many professionals have lost their manners, as well. After inviting me to present a seminar, some meeting coordinators have "helpfully" warned me, "Some of our 'consumers' will be there, and they're more like children." Would a coordinator make this announcement during the seminar, when adults with disabilities are in the audience? Don't think so. If a coordinator feels it's appropriate to warn me about people with disabilities, why isn't she also motivated to warn me about others? As in, "Some of the parents and professionals who are coming to the meeting are real duds." Many educators, especially those in non-inclusive schools, routinely use labels and negative descriptors about their students, both in front of the students and behind their backs. Ditto for many therapists who shamelessly call out, "The Down's is coming in this afternoon."

The loss of manners isn't limited to our words. Our actions speak volumes.

"Janelle" recently introduced me to her 20-year-old daughter, "Micki," a bright and lovely young lady who happens to have a disability. Micki shook my hand and greeted me. In the course of casual conversation, I asked Micki a couple of questions. She started to reply, but Janelle jumped in and answered! Micki could speak for herself, but her mother got in the way! Why did Janelle do this? Was she afraid I wouldn't understand her daughter? Was she afraid I would judge Micki by her words or oral abilities? Did she think her daughter is incompetent? Or was she even aware she was doing this? I'm not sure. Janelle probably spoke for her daughter when she was a very young child---like all parents do---and perhaps she hasn't realized Micki is grown up and can speak for herself. I can't imagine the frustration Micki must feel---and the anger.

What's frightening is that parents, professionals, educators, and service providers are supposed to be "on the same side" as the children and adults with disabilities they care about, serve, and/or teach. But with friends like these, who needs enemies?

When we exhibit these poor manners, not only are we being downright rude, but we risk causing long-term and severe emotional pain in others. Furthermore, we reinforce the notion (and its accompanying prejudices) that our society has two sets of rules: one for people without disabilities and another set for people with disabilities. And we wonder why inclusion, dignity, and respect for all people continue to be just out of our reach. On a regular basis, our words and actions set people up for exclusion.

How can we do better? First, using People First Language is crucial. (See the People First Language article at www.disabilityisnatural.com.) A person is not her disability, thus, she is not "autistic"---she "has autism." A disability label simply represents a condition or a characteristic; it does not define a person. And consider that a family member of a person who has cancer does
not say, "She's cancerous." So, why do we say, "He's disabled [or retarded, autistic, or whatever]."? Saying, "She has cancer," is more appropriate, as is, "He has a disability."

Second---and just as important---we need to be careful about sharing
information with others. Howard's father might have shared that his son was "retarded" in order to "explain" his son's behavior, speech, or something else. But the outcome of his good intention was probably less than desirable: upon hearing "retarded," people most likely assumed the worst about Howard. (What terrible things we do to people in our efforts to "do good!") Once that first impression was formed, there was probably very little Howard could do to change it. The same is true today, when we focus on a person's disability as a "problem."

There are relatively few times when it's important to share a person's
disability label with others: in special ed meetings, with medical personnel, and/or with others in the service system. Just as we wouldn't discuss the need for Viagra or the details about the boil on your bottom with anyone other than medical personnel, we do not need to share a person's disability label with anyone other than a few specific people under specific circumstances. (And even then, there are more respectful ways of sharing information with others, as described in "The Problem with Problem" article at http://www.disabilityisnatural.com - click on the Revolutionary Common Sense icon.)

Many people with disabilities are said to have "challenging behaviors." Perhaps we would do well to look at our own behavior before judging others. Is it possible these individuals may be reacting or responding to the vicious, verbal assaults they routinely experience when they hear others talking about them? Do we think people don't hear or understand what we're saying? How arrogant and uncaring can we be? Shouldn't we care about how others feel? How would you feel if others talked about you?

Third, we need to demonstrate our good manners by letting people with disabilities speak for themselves and be themselves. They are our equals! We have no right to speak for them, unless they have asked us to do so! To interrupt someone; to "explain" his behavior or actions; or to "apologize" for his drooling, his speech pattern, or anything else is to rob a person of his right to be who he is! How would you feel if your husband interrupted you during a meeting and said to others, "My wife is quite the motor-mouth, isn't she?"

The lives of people who have been labeled should not be part of the public domain. We have no right to speak for them, to reduce them to medical diagnoses, to share their private information, to talk about them (in front of them or behind their backs) in ways we would never talk about ourselves, and, in the process, strip them of every ounce of dignity. Have they ever given us permission to do any of these things?

Howard gave his permission to share his story. His experiences, as well as the experiences of countless others, are continuing lessons that help me stay on top of my manners. I hope they do the same for you.

-----If you would like a hand-out version of this "Manners" article and/or for permission to reprint in your newsletter or other publication, please write to: [log in to unmask]

-----The philosophies represented above are included in "Disability is
Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities" by Kathie Snow, and in the "Revolutionary Common Sense" hard-copy subscription newsletter. Visit www.disabilityisnatural.com or call toll-free 1-866-948-2222 for more information on both.

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WE NEED YOUR PHOTOS!

The faces of Real People beautify the www.disabilityisnatural.com website. From time to time, we refresh the site with new faces---and it's that time again!

If you're an adult with a disability or the parent of a child with a
disability and would like your/your child's wonderful face to be included on the website, please Email the photo (as a JPEG file) to: [log in to unmask] ---and read on for IMPORTANT DETAILS!

Include your full name, address, and phone number, and your/your child's age when the photo was taken. Only the person's first name, age, and state will be used on the website, to protect the person's privacy. Also include the following statement in your Email: I (your name) give permission for my/my child's photo to be displayed on the http://www.disabilityisnatural.com website.

If the photo you want to send includes people other than one child or one adult with a disability, we must also have permission from each person in the photo (or from parents, if the photo includes other children).

If you're unable to send your photo as an Email attachment, send it (along with your permission and information) to:  Disability is Natural, BraveHeart Press, PO Box 7245, Woodland Park, CO
80863.

Disability is Natural/BraveHeart Press reserves the right to select which photos will be used.  Photos cannot be returned. If the photo you submit is not used immediately, we will save it for possible use on the website in the future.

Thanks for your help in enabling us to showcase Real People on the Disability is Natural website. Questions? Write to [log in to unmask] or call toll-free1-866-948-2222.

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Please feel free to share this Email with others, and invite your friends, family, and coworkers to visit www.disabilityisnatural.com and check out what's new! While you're there, take a moment to share your comments, suggestions, questions, and ideas.

Lead with a brave heart,
Kathie Snow

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