2004-11-15

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We don't need to cure people with disabilities! We need to cure the prejudice that creates separate and unequal lives for children and adults who have been labeled!

Isn't it time people rediscovered their good manners and stopped staring? This clever design gets the right message across, without anyone having to say a word!

What is normal, anyway? And who defines it? We do! My son, Benjamin, is a very normal 17-year-old young man who happens to get around on wheels instead of his feet!

We may not always hear what a person with a disability is trying to tell us! But what if we also listen with our eyes and our hearts? This might be important for people who haven't been labeled, as well! Do we always listen to our children, our loved ones, and others the way we should? Do others always listen to us the way we would like?

What will it take? Asking this question makes us negotiators! And when we negotiate—instead of asking yes/no questions, begging, crying, threatening, and worse—we're more likely to get what we want and need! This method works—try it, you'll like it! (And let me know if you'd like a copy of the article on this subject.)

Which message is your favorite? Order it today on a T-shirt, sweatshirt, tote bag, badge, key ring, mini-poster, or as a set of notecards! Visit the Disability is Natural Store to see the other positive and thought-provoking messages that promote new ways of thinking. Are there family members, friends, teachers, medical professionals, or others in your life who need a positive attitude adjustment, in the form of a holiday gift this year? The Disability is Natural Store features items in all price ranges. A box of notecards (10 for $6.00—mix and match your choice of designs) would make a thoughtful gift for a teacher, an employee, co-worker, or anyone else who cares about people with disabilities. The badges, key rings, small stickers, large decal, mini-posters, and/or the mouse pad are great stocking stuffers for a variety of people on your gift list. For a more substantial gift, consider the Disability is Natural book; the Disability is Natural video; the sturdy, oversized tote bag, a T-shirt, or a sweatshirt, each printed with the design of your choice; or the large Disability is Natural or Presume Competence posters! And several items are on sale now—see below!

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$$$—Sale Prices at the Disability is Natural Store—$$$

It's time for us to clear some inventory, and time for you to save! Key rings (with your choice of design) are now half-price (only $1.50/each). Half-price reductions also apply to the Disability is Natural lapel pins (now only $4.00/each) and the Disability is Natural mouse pads (now only $5.00/each). The Disability is Natural window/bumper stickers have been reduced to $2.00/each. Visit the Disability is Natural Store for more details and to order, or call toll-free 1-866-948-2222.

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New Revolutionary Common Sense Articles

New ways of thinking abound at the Revolutionary Common Sense page at www.disabilityisnatural.com. Visit today to read the new articles that have been added (described below). All articles are available as PDF documents, formatted as handouts, which you can download and share with others. HTML and TEXT versions are also available for people who use screenreaders. (And my thanks to website visitors who wrote and helped me learn how to best accomplish this! Please let me know if these articles are more easily accessible.)

Clothes, toys, electronics, and other goodies are wonderful holiday presents. But there are other gifts we can give one another that are meaningful and life-changing! How about a Vacation to Kidland, Respect for Parental Expertise, Permission to Fail, and others . . . see what gifts you would like to give or receive this holiday season!

In an effort to explain, share information, and/or to "promote awareness," the lives of individuals with disabilities are often opened for public consumption. But at what cost to the people being described? We can do better, especially when we carry the spirit of the person with us!

Gadgets, doo-dads, and whachamacallits can be invaluable assets in making a kitchen more accessible. And what better time to make the kitchen work for everyone than during the holiday season, when that warm, happy room, with its wonderful smells and delicious tastes, is the heart of the home?

"Inappropriate behavior" is frequently cited as the #1 barrier to the inclusion of children and adults with disabilities—in schools, childcare centers, community activities, employment, and other settings. The wisdom of Joe Schiappacasse takes us beyond the traditional solutions, explores the Us/Them mentality, and helps us see (everyone's) behavior in a new light!

The Individuals with Disabilities Education Act mandates curriculum modifications (CMs) for students who receive special ed services. Unfortunately, this part of the law is often ignored by schools, or unfulfilled by educators who don't feel they know how to create appropriate CMs. But it's not rocket science! This article will get your creative juices flowing!

Have you thought about your philosophy—your position—about people with disabilities lately? Perhaps it's time for a year-end inventory of what's in our hearts and minds. Our positions make a huge difference (for better or worse) in the lives of people with disabilities. Awesome changes are possible when we tune-up our positions!

What does it take to ensure children and adults are included in their communities? A change in our attitudes, not a change in people with disabilities! Commonsense beliefs can open the door to inclusion in communities where everyone belongs. Inclusion in the community will happen when we believe it can happen!

Rights. We—people with disabilities and family members—have them. Technically, these might be entitlements to services, benefits, or legal protections, but many use the generic term "rights" when referring to government-mandated early intervention (EI) and early childhood education (ECE), special education, respite care, employment/vocational-rehabilitation (VR), housing assistance, and other services.

Many people with disabilities and their families may be pleased with the rights afforded under federal and state laws. Yet many others are frustrated and angry by the poor quality and/or lack of relevant services. In either case, there are many family members and people with disabilities who seem to see the fulfillment of their rights as the most important goal in their lives. For some it’s an almost frenzied zeal—like cheerleaders, we exhort our side to “fight and win.” For others it’s a quiet, stealth-like determination that consumes our waking hours. The intended outcome—a person/family receiving all benefits and rights afforded under state and federal policies—may occur, and we then feel we have achieved success. Some of us even view this as a “victory”—as if we’ve been fighting a war and our side finally “won.” Later, we may be shocked to learn the victory was short-lived. For when moving from one service system to another (EI to ECE to special ed to adult services, for example), we may have to start all over again. Success in one venue doesn’t guarantee success in the next!

So we may temporarily achieve the intended outcome: getting all our rights. In the process, however, a variety of unintended consequences sneak into our lives, some of which we’re not even aware!

The quest for rights or services may leave us frustrated, angry, and tired. We don’t treat ourselves or our loved ones very kindly when there’s no time or energy left to have fun, relax, read a book, go to a movie, be with family, enjoy peaceful dinners, and more. A positive outlook on life can devolve into a permanent, negative, pessimistic daily struggle against our collective “enemies” in the system. Our personal identities become cloudy as we assume the “victim” mentality. The list of unintended consequences is varied and endless. Still, many of us relentlessly pursue our rights, believing that’s where we’ll find the gold at the end of the rainbow.

Does a two-year-old have the opportunity to be a “terrible two” and say “No!” to everything? If she’s unable to experience this powerful and important milestone because she hasn’t yet acquired speech, she needs a communication device or some other form of effective communication so she can assert herself the way other two-year-olds do. If she doesn’t acquire the power to communicate “no” as a child, how will she protect herself when she’s older?

Too many children, however, are denied the opportunity to communicate at the age-appropriate time (which prevents them from leading normal lives). Parents, therapists, or others believe that giving a child a communication device will prevent the child from learning to speak! There is no proof to this assertion; it’s someone’s opinion. And, yes, some children may never acquire oral communication—all the more reason to provide an alternative way to communicate. Conversely, I have known children who, as two-year-olds, used communication devices, signing, and other methods, and as they acquired oral communication, they stopped signing or discarded their devices. Alternative forms of communication did not get in the way of their learning to speak.

Does a toddler have the opportunity to “run away” from Mom and Dad? To come and go as he pleases—to explore and master his environment? If he can’t because he’s unable to walk, he needs a power wheelchair or other form of independent mobility so he can learn and grow from the rich environments of his bedroom, his home, his yard, and his community. Independent mobility provides more than movement from point A to point B: it promotes self-determination and self-esteem, and enables a child to play with others, be a big brother, help around the house, take control of his own life, and so much more! But many children are denied independent mobility, for the same reasons others are denied communication devices. When this occurs, they are also being denied the right to experience typical development and lead typical lives.

Is a child with a disability given an allowance? Expected to help around the house? Taught how to use the phone? Have a pet he’s responsible for? Wake up to an alarm clock? Make her bed? Help with cooking or cleaning up after a meal? Have birthday parties with friends (not just family)? Select presents for others? Is the child expected to participate in and experience the traditional, ordinary, typical activities of her brothers, sisters, and similar-aged children? Is she expected to achieve an academic education which will enable her to attend college, vocational school, and/or be employed in a real job? Do we expect the child to leave home one day, live on her own, get married, and lead a real life as an adult? When we don’t encourage and provide typical experiences (and have high expectations) we’re robbing a child of the “right”—the opportunity—to lead a normal life.

Parents may think it’s the child’s disability diagnosis that precludes their child from participating in the ordinary routines of childhood. But in my experience, it’s not the disability itself, but the lack of tools—a communication method, independent mobility equipment, other assistive technology devices, environmental accommodations, behavior supports, or anything else—that prevents a child from enjoying typical experiences. Simultaneously, we may not recognize the value of these ordinary experiences because we’re too focused on rights, services, therapies, or entitlements.

I’ll never forget the morning I repeatedly yelled at then ten-year-old Emily to get her room cleaned up once and for all. Eight-year-old Benjamin wheeled over to me, and in a nervous, but hopeful voice, asked, “Mom, do you want me to clean up my room, too?” With this whack on the side of the head, I realized I had not been giving Benj enough opportunities to be responsible, and I had not been treating him like his sister was treated! “Yes!” I replied sternly. “Get in there right now and don’t come out until your room is clean!”

With a big grin on his face, he wheeled to his room and put some of his toys in the bins on his dresser. Then, near tears, he wailed, “Mom, I don’t know where some of this stuff goes!” How could he? His dad or I had been doing this for him. What a lesson from a child! Things changed after that. Later, Benjamin often whined about having to clean up after himself. What kid doesn’t? This, too, is a typical, ordinary, valuable childhood experience!

What about today’s adults? As children, many were not allowed to experience typical opportunities, so they didn’t learn “the basics.” As adults, many are still not being allowed to participate in ordinary experiences or assume typical adult responsibilities.

It seems that many adults with developmental disability labels are “placed” in group homes and other “special” living arrangements because, as children they were not expected to succeed, not allowed to participate or learn from typical activities, nor be responsible for themselves to the greatest degree possible. Thus, as young adults, they’re believed to be incompetent, so others continue to “take care” of them. On the other hand, children with disabilities who were raised in an environment where they were expected to lead normal lives (with accommodations, supports, etc.), become adults with disabilities who lead normal lives (with accommodations, supports, etc.).

Is an adult with a developmental disability expected to explore and decide what type of job he wants? (And do we believe him, trust his instincts, and respect his dreams, or do we dismiss his ideas as “unrealistic”?) Does he have the opportunity to attend college, trade school, or pursue other avenues to help him learn the skills needed for his dream job? Is he expected to know—or to learn—how to find a job the way people without disabilities find jobs? Is he expected to be responsible for his own money? Does he have the opportunity to determine and/or find his own place to live, with the roommates and supports of his choice? Is he able to get the naturally-occuring help that’s available from family, friends, neighbors, and coworkers, or is he dependent on service providers?

The presence of a disability diagnosis is not a barrier to leading a normal life. No, the barrier exists in our minds—in our beliefs about the person who has been labeled and the actions we take based on these beliefs.

We may not believe a child or adult with a disability is physically or mentally capable of doing many “normal” activities. This is nothing short of prejudice. We prejudge a person based on the label, or we make decisions without considering other possibilities and options, including the use of natural supports, modifications, and/or assistive technology.

At age 22, Casey still lives at home and attends a day program. She has never worked and her mom, Martha, says she never will: “Casey can’t talk and she’s low-functioning. She can’t do what other people do.” When asked why Casey doesn’t have a communication device, Martha says they tried one years ago, it didn’t work, and that’s that! She’s not interested in exploring other devices or other forms of communication for her daughter because Martha says she “knows” what Casey wants. Martha has made Casey dependent on her, and under the current circumstances, Casey’s opportunities for success are limited. But with assistive technology, supports, and/or modifications, Casey could probably communicate her wants and needs, and move her life in the direction of her choosing. Without those tools, she’s stuck—imprisoned in environments she has no control over. Casey’s disability isn’t a barrier to her success, but her mother’s attitudes and beliefs are.

Fear, worry, or selfishness may drive our actions. Sonja says she must feed ten-year-old Jason at every meal because, “He can’t hold a fork or spoon very well.” She refuses to let Jason feed himself finger foods because, “He’s a messy eater and I’d probably have to change his clothes.” What about tucking a napkin in Jason’s shirt, spreading another on his lap, and helping him learn to clean his face and hands with a wet wipe? Sonja explained, “But I can feed him faster than he can feed himself.” Is Sonja afraid Jason will fail, so she’s unwilling to let him try, or are her needs more important than her son’s? How can Jason have real experiences when his mom believes cleanliness and speed are more important than Jason learning to care for himself? Can we afford to allow our fears or needs to get in way of another person’s opportunities to live and learn in the real world and lead a normal life?

A person who’s been labeled may not do things in the same way, with the same speed, using the same tools, and so forth, as others. Still, his experiences as he does things “his way” are no less valuable. Who wrote the rules on the “right way” to do anything, anyway?

To ensure children and adults with disabilities enjoy the ordinary, typical, growth-producing experiences most people take for granted, we may need to: listen more carefully, with our ears, our eyes, and our hearts; develop new attitudes; be more creative in our thinking; and provide assistive technology devices, supports, modifications, extra time, and so forth, in natural, inclusive environments. Legal rights, entitlements, and services may be important, but their value pales in comparison to the rich, varied, and collective day-to-day experiences that are the foundations of living a normal life.

© 2004 Kathie Snow. If you would like a handout version (PDF) of this article, please send your request, along with the title of the article ("The 'Right' to a Normal Life") to: kathie@disabilityisnatural.com. You may share and/or distribute this Email or the PDF version of the article to others (non-commercial use only). As a courtesy, please let me know how/when you use it. Please do not violate copyright laws: request permission before reprinting in publications or on websites.

GAG!: While perusing a disability organization's newsletter, I almost fell out of my chair when I read about a new therapeutic intervention: model railroading for people with disabilities! According to the article, this new form of therapy will lead to improvements in "social functioning skills" and provide other benefits (all described in professional, therapeutic lingo). The agency in charge is involved in "task analysis activities" in order to plan the therapeutic activities of the project.

Now, I'm not against model trains—they're pretty cool! And if a person with a disability enjoys model trains, there's no doubt he (or she) would reap benefits from joining the local model train club. He would be included in his community, he would make new friends (AKA improved "social functioning skills"), he'd learn lots of new things (and would do his own "task analysis" with his new "HO-Gauge" pals), and many positive outcomes would probably occur. Since all this can happen naturally, why would anyone decide to make model railroading into a "therapeutic activity" for people with disabilities?

Why can't individuals simply get connected with the "regular" model train clubs in their communities (and if there's not a club, a new one can be started)? Why are some people still thinking in terms of "special" (e.g., segregated) activities? Why do we take ordinary, community activities—things like model train groups, gardening, art, music, pets, swimming, horseback riding, and more—and turn them into therapy? Why do we continue to "therapize" people's lives? When will we embrace the idea that people with disabilities can (and should!) participate in these activities, in natural, inclusive settings (and receive the benefits) just like everyone else?

Go to a conference, enjoy the presentations (or not), then complete an evaluation form. As a presenter, I enjoy and appreciate the feedback—good and bad—from those in the audience. Frequently, evaluation comments tell more about the participant than the presenter's performance, as you'll see in the following words written by a special education teacher who attended my presentation at a conference:

Long ago, I realized that each person in the audience hears a "different" presentation—what each person hears is filtered through his/her own attitudes, perceptions, values, and experiences, and perhaps even if the person had a good night's sleep and/or a good breakfast that day! So I don't take things personally. But when looking at The Big Picture, comments like the ones above are disheartening. If educators don't believe in students with disabilities, they won't provide their students with the best education—the education that's needed to ensure children with disabilities can go on to college and/or enter the workforce with a real job! But then my heart is lifted when I read comments like the one below, written by another special education teacher who attended the very same presentation as the special ed teacher in the previous paragraph:

Hip-Hip-Hooray! That's what it takes: a change in attitude—a new way of thinking!

Books for Little Ones and Their Families: Darby Kethan, a friend and former early childhood educator from Texas, is now engaged in a new career at Innovative Educators, a supplier of books for young children. The print catalog she sent me, as well as the website (www.innovative-educators.com), includes a wide variety of boardbooks, toddler hardcover books, read-along books and CDs, puppets, puzzles, and more, including materials in Spanish. Many of the books are bundled and priced for school purchase, others are priced individually for famlies to purchase. Check it out!

Thanks for your interest in new ways of thinking! Feel free to share this Email newsletter with others. We'd also like you to contact us and share your comments and ideas about this newsletter, the Disability is Natural website, or anything else of interest. If you received this Email from a friend and would like to subscribe, visit www.disabilityisnatural.com or send an Email to kathie@disabilityisnatural.com with your request.

Happy Holidays! And thanks for all you do to create a more inclusive society where everyone belongs!

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