Disability is Natural Announcement
The Disability is Natural Free Press
Copyright November 2003 by Kathie Snow
IN THIS ISSUE:
--- Out of the Mouths of Babes
--- Stay Warm in Our New Sweatshirts!
--- The Case Against "Special Needs"
--- Universal Design "Smart" Homes
--- New "Stars" on the Website
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OUT OF THE MOUTHS OF BABES
Jennifer Schwartz, a parent and staff member at Kansas Association of Centers for Independent Living (KACIL), and her family recently had a discussion about my People First Language (PFL) article. (In the article, I stress eliminating the "H-word," and suggest using the more accurate term, "accessible," when talking about parking spaces, restrooms, etc.)
Jennifer wrote to tell me about a funny outcome of their family discussion: "Jessica, my twelve-year-old sixth grader, had a substitute teacher who referred to Jessica as 'handicapped.' Jessica obviously remembered some of our PFL discussion, and she immediately told the sub, 'We don't use the H-word.' The sub then asked, 'So what do I call you?' Jessica had the right idea, but she got things a little confused when she replied, 'I'm accessible!' "
Jennifer added how proud she was that her daughter spoke up for herself, but hopes Jessica won't announce she's "accessible" to teenaged boys in another few years!
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STAY WARM IN OUR NEW SWEATSHIRTS!
Many of you have enjoyed wearing T-shirts with powerful messages, like "Presume Competence," "Disability is Irrelevant," "People with Disabilities are People First," and other positive ways of thinking, available from the Disability is Natural website. And some of you have asked if those same messages were available on sweatshirts . . . well, they are now! This is a brand new item we're adding to the www.disabilityisnatural.com Store. These Fruit of the Loom 50/50 long-sleeved white sweatshirts will keep you warm and help others learn new ways of thinking at the same time! Standard sizes are adult M, L, and XL, priced at $20.00 each, plus shipping and handling; please inquire about other sizes. Shop safely online at www.disabilityisnatural.com or call toll-free 1-866-948-2222.
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THE CASE AGAINST "SPECIAL NEEDS"
Words simultaneously reflect and reinforce our attitudes and perceptions; words shape our world. Many "disability labels" evoke feelings and imagery that perpetuate archaic and negative stereotypical perceptions. In turn, these perceptions create a powerful attitudinal barrier, which is the greatest obstacle to the success and inclusion of individuals who have been labeled.
Using People First Language (PFL) is a step in the right direction. For example, using PFL, we put the person before the disability and use more respectful terminology as in, "He has a cognitive disability," instead of, "He's retarded." (Visit www.disabilityisnatural.com to download the PFL article.) Many of us are consigning stigma-laden personal descriptors to the junk heap, such as "high (or "low") functioning," "developmental age," "wheelchair bound," and others. But one term---"special needs"---continues to be embraced by many. Because this descriptor is so commonly used, we seldom consider what message it sends or what image it evokes.
"Special needs" is a loaded descriptor that has done nothing to improve perceptions and everything to reinforce negative images. As a parent, I once used this term to describe my son when he was very young. Why not? That's what I heard coming out of the mouths of many: other parents, as well as therapists, educators, and others. But I stopped saying this years ago when I realized it's a descriptor that generates pity. Tell a new acquaintance, "My child has 'special needs'." The response is predictable: a sad, "Ohhh..." accompanied by a sympathetic pat on the arm. Worse, some even add, "I'm so sorry..." And this conversation often takes place in front of the child! What must it feel like to be the object of pity, especially when it's generated by the words of your own parent or someone else who professes to care about you?
Adults with developmental disabilities are our greatest teachers. I've never met one who likes "special needs." They vehemently describe disliking the "special" label as children, and they absolutely detest it as adults.
When I share this information during presentations, many parents defend their use of the term and add, "But don't all children have 'special needs'?" or "Aren't all children 'special'?" I might agree if the term had positive connotations and if we really meant "special." But it doesn't and we don't.
Once we use the "special needs" label, we stop thinking about an individual child and our ingrained assumptions take over. "Oh, yes, we know about those 'special needs' kids..." And at that point, we effectively rob a child of opportunities and put limits on her potential.
First, we've stripped her of the opportunity to define herself; what child can defend herself against the words and actions of her parents, teachers, and others? Second, we continue our robber baron ways by stealing opportunities for the child to lead a typical life. When applied to children and adults with disabilities, the "special" descriptor frequently---and almost automatically---leads to segregation! If we say a child has "special needs," then by extension, she must need "special (segregated) ed," "special" activities, and "special" environments. If she has "special needs" then she must not be "regular," and is therefore not entitled to participate in "regular" (typical) activities or live a Real Life. Too often, "special" has become a metaphor for "segregated."
A parent may believe that her child can and should be included in school and the community. But if she uses "special needs" when describing her child to others, they may believe that inclusion isn't an option---only a "special" environment will do.
Labeling a child with the "special needs" descriptor puts her in a box---a box of our making, a box she never asked to be put into, and a box that limits hopes, dreams, high expectations, opportunities, and more. Many educators admit that they routinely have low expectations for children who are labeled with "special needs."
If our society believed children with "special needs" were really special, wouldn't every parent dream of having a "child with special needs?" But the opposite is true: our society so devalues children with disabilities that identifying and aborting them before they're even born is recommended by many health care professionals, and practiced by many parents. And within the adoption world, "special needs children" are often at the bottom of the list of "desirable children." So, again, just how special are children with "special needs?" Isn't the term actually a harmful euphemism which means just the opposite?
What do we really mean by "special needs" anyway? Like other disability descriptors, it may initially apply to one aspect of a person's life (a medical condition), but it quickly defines every aspect of a person like a terrible, dark shroud. Some people use the longer descriptor: "children with special health care needs." What makes one type of health care needs different or more "special" from another?
Where, exactly, is the dividing line between "regular" health care needs and "special" health care needs? Who made this rule? Is this written somewhere? Do children with disabilities go to "special needs doctors" or "special needs hospitals?" I don't think so! During visits to my son's pediatric orthopedic physician, we saw children who had permanent physical disabilities and others with broken legs or arms. Does the child with a developmen tal disability have "special needs," but the child with a broken leg has "regular needs?"
If we use the "special health care needs" descriptor with legislators or policymakers, don't we need to explain what we really mean, or is the "special needs" imagery ("those poor, pitiful children") so deeply implanted in people's minds that it's assumed we know who and what we're talking about? A child might need a specific type of health care services, a wheelchair, or other types of support, accommodations, or assistive technology. And these may be different from the needs of a majority of children. But what makes these needs "special?" They're not "special" to the child. They are, in fact, perfectly ordinary needs for him. Calling my son's needs "special" because he needs a power wheelchair for effective mobility and I don't (at the present time) is an arrogant judgment call on my part.
What about the "special ed students" descriptor? In one school district's report on its "inclusive practices," the terms "special education students" or "special needs students" littered every page. The very use of these terms contradicted the thesis of the report: that students with disabilities were "included." Exclusion and marginalization always begin with the language we use and the mental images evoked by our words. In schools that are truly inclusive, students who receive special education services are "students," first.
Who really benefits from the "special needs" label? Certainly not the children or adults who have been labeled! They've been set apart and, thus, marginalized. Supporters of this descriptor can argue that saying "children with special needs" was necessary when advocating for certain laws, programs, or services. However, the same outcomes could have been achieved without the use of this pejorative term. In too many instances, we have chosen to use "special needs" in order to gain our objectives (because it evokes powerful emotions), but at what price to those who have been labeled?
"Special needs" is everywhere! The term is used by many organizations, it's on hundreds of websites, and it's one of the best terms for pulling at heartstrings! Want to raise money for your organization? Promote it as a fundraiser for "special needs kids," consider the imagery ("those poor, pitiful children"), and watch the dollars roll in. But again, at what price to the children who have been saddled with this sympathy-laden term?
Have we ever wondered how this descriptor might
impact other children in the family? A brother might think, "If Mom says Katie is 'special,' what does that make me? Does Mom love her more?" The label can breed resentment and anger. But as the brother grows, he'll probably realize he doesn't want to be "special," especially if his "special" sister is marginalized, excluded, and pitied.
Far from being a compliment or an accurate term, "special needs" is a pejorative descriptor that creates a powerful attitudinal barrier to the inclusion of people who have been labeled. When using People First Language, we put the person first and also replace antiquated descriptors with words that are more respectful and accurate. But there is no singular replacement term for "special needs."
We can, however, use a variety of different descriptors, depending on the situation. In schools---and when it's appropriate---we can say "students who receive special ed services" (that's what it's supposed to be: services brought to the student, instead of making the student go to where the services are located). And we can use the generic, "children with disabilities" or the specific, "A child with (the name of the medical diagnosis)," when appropriate. But the use of any label should be restricted to specific times and places (at an IEP meeting, the doctor's office, etc.). Labels are, after all, simply medical diagnoses, and just as most of us don't share personal information such as medical diagnoses with every Tom, Dick, and Harry, we shouldn't be sharing the personal information of children and adults who have been labeled unless it's absolutely necessary, under certain circumstances, and with the permission of the person!
If we're serious about exploding disability myths and creating an inclusive society, do we dare set one group apart with the "special" descriptor? Shall we continue to perpetuate pity and marginalize people by using this label? Isn't it time to stop calling people names which they never chose to use about themselves? When we change our language, we change perceptions and attitudes. And when the Great Wall of attitudinal barriers falls, other barriers will also come tumbling down. Are the words you're using promoting a positive or negative image? Are they propping up the Great Wall of harmful perceptions or helping to tear it down?
If you would like a hand-out version of this
"Special Needs" article, or to request permission to reprint in your newsletter or other publication, write to kathie@disabilityisnatural.com
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UNIVERSAL DESIGN "SMART" HOMES
Charles Schwab Architects AIA has published a wonderful book: "Universal Design 'Smart' Homes for the 21st Century," which includes "52 home plans you can order and build." Each of the architectural renderings includes extensive details of the features and benefits of the 52 homes. And these certainly are "21st century" homes! They're energy efficient and physically accessible, and they also include user-friendly benefits such as "through the wall package/mail drop," no-step and ramp-free entrances (no more of those long, ugly, winding ramps to the front door!), a storage room designated as a "mobility closet/robot room" in anticipation of the increased use of home robots, and many other unique and helpful features. And if a homeowner has no use for a "mobility closet/robot room," this space can be used for a home elevator, if needed. I think you'll enjoy seeing all the incredible new ways to can create accessible, smart homes that work for everyone!
With the order form in the back of the book, readers or their architects can purchase the actual blueprints (vellum reproducible or CADD files). But this book can be very helpful even if you're not planning on building an accessible home in the near future---I learned some new ways to make our current home even more accessible just by reviewing the descriptions of the 52 homes. Visit www.universaldesignonline.com or call toll-free 1-877-221-1628 for more information. The regular price of the "Universal Design 'Smart' Homes for the 21st Century" book is $31.45 (includes shipping and handling), but if you mention that you read about the book in the Disability is Natural Email newsletter, you'll receive a $5.00 savings, making the price of the book $26.45 (which includes shipping and handling)!
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NEW "STARS" ON THE WEBSITE
Thanks to all who sent photographs of their loved ones to grace the www.disabilityisnatural.com website. Almost all the photos have been added, and those that haven't will be added shortly. It's great to see pictures of children and adults with disabilities living Real Lives!
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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! Be sure to visit the Revolutionary Common Sense page for a library of articles that may be helpful. And we'd love to hear your comments, suggestions, questions, and ideas.
Lead with a brave heart,
Kathie Snow
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