New Ways of Thinking and Revolutionary Common Sense
In the articles on this website, and in my (Kathie Snow) books and presentations, I explore these issues in greater detail and recommend solutions. These include, but are not limited to, changing our language, attitudes, and actions; focusing on a person's strengths and abilities and building on those (instead of trying to "remediate the deficits"); ensuring children and adults with disabilities have the "tools" they need to succeed (assistive technology, supports, accommodations, modifications, etc.); and using the abundant supply of natural supports and generic services that exist in all of our communities to meet the needs of people with disabilities while simultaneously ensuring their inclusion in all areas of life.
It's time for children and adults with disabilities to take their rightful places as fully-participating and valued members of our society. We can do this; we've done it in our family and others are doing it, too.
The Disability is Natural web site and its online store are brought to you by Kathie Snow and BraveHeart Press, Kathie’s family-owned, home-based small (tiny!) business. She's assisted by husband, Mark, and son, Benjamin. Thank you for visiting our site!
WHAT WE BELIEVE
The mission of Disability is Natural is to encourage new ways of thinking about developmental disabilities, in the belief that our attitudes drive our actions, and changes in our attitudes and actions can help create a society where all children and adults with developmental disabilities have opportunities to live the lives of their dreams, included in all areas of life.
Contrary to today's conventional wisdom (the status quo), a person's disability diagnosis is not the "problem." There have always been people with disabilities in the world, and there always will be. Like gender, ethnicity, religion, and many other characteristics, the presence of a disability is one of many natural characteristics of being human. This sentiment is expressed in the U.S. Developmental Disabilities Act, in the box above.
Like many parents, I was initially bewildered when my son, Benjamin, was diagnosed with cerebral palsy at the tender age of four months. But I got on the bandwagon recommended by the experts: early intervention and therapy, therapy, therapy. I joined the ranks of others: being Therapy Mom of the Year. If a little was good, then more was better, right? So it was therapy seven days a week, via taking my son to the clinics, having therapists come into the home, and doing the home programs in between. I had unknowingly entered "Disability World" (but I didn't call it that at the time). I hated what our lives had become: therapy, therapy, therapy and all of our efforts focused on trying to get Benjamin to do what he couldn't do.
When Benj was three, I participated in the first class of Partners in Policymaking in Texas, a leadership developmental training program for parents of kids with disabilities and adults with disabilities. It was a life-changing experience as I learned from extraordinary leaders in the field. And I also learned from my classmates: adults with disabilities who had "been there, done that." They shared their life experiences: what it felt like to be taken to therapy all your life and the "not-okay" messages they received as a result. What it felt like to be segregated in special ed classrooms (continued "not-okay" messages); and what their lives were like as adults (living in poverty, having a poor education, and no job skills). The Partners program taught us how things could be different, and it also made me realize that we could (and should) have the same dreams for Benjamin that we had for our older daughter, Emily—the same dreams we had for Benjamin before the diagnosis.
As a result of the training and learning from others' experiences, I realized that inclusion is the natural state of being; every child is born included. Our daughter would always be included and I was determined that Benjamin would be, too. So I enrolled him in a neighborhood preschool, where he was included, instead of the segregated public school special ed program. We moved from Texas to Colorado, to a small town where the elementary school was inclusive—there were no special ed classrooms; all students were in general ed classrooms.
By first grade, Benjamin had one foot in the Real World, being included in school, in Cub Scouts, T-ball, and more. No "special" (segregated) activities for our family. But he still had one foot in Disability World, going to therapy two times a week after school. He began resisting therapy, and after six weeks of balking, he broke down in tears, saying, "I just want to go home after school like the other kids. Going to therapy doesn't make me feel like a regular person!" A regular person. He felt like a regular person at home and in school and Cub Scouts and T-ball, but not at therapy. He was telling me, in his 6-year-old way, what adults had told me years before in the Partners class.
That was the day we got out of Disability World. Benj never went to therapy again. We took what we had learned from therapists and simply incorporated beneficial activities throughout his day. Taking karate lessons enabled Benj to have better "range of motion" than years of occupational therapy; having fun in the hot tub was as beneficial as "water therapy;" and so on. We began focusing on Benjamin's strengths and abilities and built on those. I told the kindergarten teacher he wasn't going to grow up to be a calligrapher, so forget the handwriting stuff; he was doing all his work on the computer.
We've made sure Benj has always been included and we've continued to focus on what he can do, instead of what he can't. He earned his Master's degree recently and is on the job hunt! (Read more about him in his story). In 2013, we moved from Colorado back to our native Texas to be closer to extended family and for better job opportunities for Benj.
In 1991, I was a stay-at-home mom when the Texas Partners coordinator asked me to do a presentation to the next Partners class about the project I chose: an article I wrote about People First Language. It wasn't on many people's radar back in 1991, but I was very concerned about the words used to describe my son and others with disabilities. I was a Nervous Nellie about doing a presentation, having to learn about creating overhead transparencies and the like, but I guess I did okay, as the coordinator recommended me to Partners programs in other states. Invitations to conferences large and small followed. The rest, as they say, is history. I accidentally became a public speaker. I've been doing it now for about 25 years, at hundreds of events, and have enjoyed every minute of meeting thousands of parents, people with disabilities, educators, service providers, and others from coast-to-coast.
In 2001, I wrote the first edition of Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities (now in its third edition), and launched our website at the same time. What's followed? Hundreds of articles, an email newsletter, a line of products that promote new ways of thinking, and other books. A variety of universities, as well as public schools and agencies use my books, articles, and products, as do parents, families, and people with disabilities.
While I've been called a trainer, presenter, author, etc., I'm really a student, learning from the wisdom and experiences of children and adults with disabilities (the true experts in the field), and also from parents and leaders in the field. I continue to learn and, as I do, will continue to share what I've learned with others. Some lessons are available in video clips offered by the MN Governor's Council on Developmental Disabilities here: http://mn.gov/mnddc/kathie-snow/index.html
Thanks for visiting our site and enjoy!
I’ve always lived a “normal” life—I don't know any other way to live. Long ago, my parents helped me learn that having a disability is not a barrier to success. I use a power wheelchair and other assistive technology devices, and I wouldn’t change a thing about my wonderful life!
My parents noticed that once I started talking at age three, I had an extraordinary talent for mimicking others' voices. (My mom says I have a great auditory memory.) I loved Ringo Starr's awesome British accent in my favorite show, “Thomas, the Tank Engine.” When I learned to read, I could sound like Ringo while reading my books out loud. And it goes on today: I’ve kept my parents laughing by doing impressions of Elvis Presley, James Earl Jones, Sean Connery, and others.
Because I have difficulty writing with a pencil, my parents got me on the computer when I was four, and I began writing plays—my versions of my favorite stories. I printed copies, assigned roles, and my family and I “performed” around the kitchen table.
I was included in elementary school, where I was just “one of the kids.” I played T-ball, was in Cub Scouts, and took karate and drama lessons, as well as a Red Cross babysitting course. When my sister and I went to middle school, our family decided homeschooling would be best. This decision wasn’t because of disability or special education issues; it’s just what my sister and I wanted.
At age 11, I said I wanted to be the first James Bond who used a power wheelchair! My Mom suggested I take drama classes to learn how to act. So I did, and I performed in several plays. It was great fun, and because of my great memory and mimicry skills, one drama teacher told the other students, “Be more like Benjamin!”
In June 2006, my Mom told me about a film contest she read about in a newspaper. “Film Your Issue” was a national competition for young people to submit a short film on an issue of importance to them. I wrote, produced, directed, and starred in a 60-second film entitled “Thumbs Down To Pity.” It focused on Hollywood's "pitiful" portrayal of people with disabilities, and in the film I tell people who make movies, “Enough with the stereotype—it's worn out!” The title was a salute to film critic Roger Ebert and his “thumbs up” or “thumbs down” movie recommendations. My film was one of five national winners! See it here: https://www.youtube.com/watch?v=5mbA3QUdsVk
The winners of the 2006 Film Your Issue contest were honored at a ceremony at the United Nations in New York City. Among the winners, guests, and dignitaries, I was the only person with a visible disability. I hope my participation helped teach others that people with disabilities can succeed in ordinary activities. Later, the winning films were showcased at the Sundance Film Festival, and we had a great time there, too. My film has since won other awards and has been shown at international film festivals. In 2009, it won Best Public Service at the Moscow (Russia) Film Festival. Hundreds of organizations have purchased my film, and several universities and government offices use it for training purposes. Let me know if you’d like to purchase my “Thumbs Down to Pity” DVD ($13.00 includes shipping and handling).
In August 2009, I graduated from Pikes Peak Community College earning my Associate's degree. I was inducted into Phi Theta Kappa, the national academic honor society for community colleges. For one assignment in a magazine-writing course, I wrote an article about scoliosis surgery—something I have personal experience with. The article was later published in San Diego Family Magazine.
In May 2012, I earned my Bachelor's degree in Interdisciplinary Studies (political science and film/media studies) from Arizona State University, graduating Magna cum Laude. In the summer of 2014, I earned my Master’s Degree in Social Change Communication from the University of Illinois/Springfield.
I earned my Bachelor's and Master's degrees via online programs at the universities, and I really enjoyed my online education — I could stay up late and sleep in, instead of getting up at zero-dark-thirty for an 8 a.m. class! Seriously, online classes were the best fit for my learning style.
In 2000-01, I served on the Youth Advisory Committee to the President’s Task Force on the Employment of Adults with Disabilities, and my Dad and I traveled to Washington, DC for several meetings. I was featured in a film about assistive technology produced by the Rocky Mountain ADA Center; appeared in a U.S. Department of Education poster about accessibility and accommodation in computer labs; was a national winner of a U.S. Department of Labor essay contest when I was 13; and won a C-SPAN essay contest when I was 18.
In January 2010, I submitted an essay on the importance of healthcare reform for a scholarship award and I won! See more at http://www.1800wheelchair.com/scholarship-winter-2009/.
For a Fall 2010 class, one assignment was to create an interactive online portfolio, to demonstrate how a student's previous experiences are related to possible future career goals: https://sites.google.com/site/portfoliobenjaminsnow/
For my Master’s thesis, I researched how smartphones and tablets can increase the autonomy of people with developmental disabilities, and created a website to share my project with others: www.beingautonomous.com.
It’s my hope that all people with disabilities can live the lives they want to live, and not be put away in “special” places!
I had polio when I was about two years old, and I remember walking on my tiptoes, wearing leg braces, and my mother taking me to physical therapy.
I can't remember the therapist’s name, but he looked like David Janssen from "The Fugitive" TV series. He was a nice, respectful man who always talked to me about me, and talked to my mother about everything else. Over time, he learned what I liked to do by just asking me. I told him about having fun in our plastic wading pool and how I liked going barefoot outside. I also told him about the huge sycamore tree—so tall that I couldn’t reach the limbs—that dominated our back yard.
When the weather turned warm, he said, “Mark, you don't have to wear leg braces anymore and you don't need to keep coming here so much. You can do stretching and exercises at home instead of here at the clinic. So go outside two or three times a day and walk barefoot in the yard. You’re growing pretty fast, and I bet you don’t use the wading pool much anymore. Instead, fill it up with sand and walk around in the sandbox like you're on a journey through the desert.”
He went on. “Before school starts in September spend some time sitting in the sand and move your feet and legs back and forth. Make a big number 1 in the sand with this leg, and then with the other leg. Then, make a big letter Z in the sand, with this foot and then the other foot. And then, stretch your legs out in front of you and spread your feet and make a big V with both feet.”
This last part has stayed with me to this day. He said, “Have your father get a rope that’s about as tall as me, and tie some big knots in the rope about a foot apart. Have your dad tie the rope to the bottom limb of that sycamore tree in the yard. Start pulling yourself up that rope and climb up the limbs of the tree. Go all the way to the top, if your mom says that’s okay. Come back and see me in a few months and tell me what you can see from the top of the tree.” So I spent a few months playing in the sand, going barefoot and climbing trees. I 've been fascinated by heights, the wind, flying, and flickering leaves ever since.
1966 was a big year for me: I was Patrol Boy of the Month in both February and May, and I was on the sixth-grade 400-meter track team at the All-City Public School Relays. I had corrective (polio) surgery on one of my legs when I was 10, and again when I was 20. In between, I was the only one in my family watching television when Jack Ruby shot Lee Harvey Oswald, and when astronauts Armstrong and Aldrin stepped onto the moon.
But I didn’t see the final TV episode of “The Fugitive,” even though it was watched by the most people in television history up to that time. I never watched the show at all, because my childhood brain couldn’t accept that a guy who looked like my therapist was accused of murder.
Throughout public school and college, I knew only a handful of people with disabilities. Billy was a good friend all through elementary school. He had a cleft palate, but that didn't matter. In third grade, Larry sat across from me. He stammered when our teacher, Mrs. Harwell, called on him, but he always had an answer to the question. And in high school, my friend, Michael, had one arm amputated below the elbow. He absolutely excelled as a first baseman in PE class with one hand.
In junior high, I had an English teacher named Mr. Herring who had lost one of his arms to a war injury. He often drew pictures on the chalkboard using his other hand. The process was slow, but the drama of his pictures taking shape made his point. One lesson was about the use of commas. He drew one illustration of a person shivering in the cold with the caption “I’m freezing, Dad.” Next to it he drew a child with a mischievous grin on his face, closing a refrigerator, with a grownup behind the door. That drawing had the caption, “I’m freezing Dad.”
During college, I discovered a passion for radio and television production, which allowed me to get paid minimum wage for 60-70 hours per week—and it felt like fun, not work. It’s probably no coincidence that all those years ago when I was a kid, the most interesting thing I saw from the top of my sycamore tree was the blinking red light of a television transmitter tower.
I've enjoyed a variety of different careers, and once, someone really did keep my resume on file and called me more than a year later and hired me. That was for the Americans with Disabilities Act Information Center in the Rocky Mountain region, where I worked for over five terrific years.
Today, I'm a full-time worker-bee in our BraveHeart Press/Disability is Natural home-based business. Every day, I talk to nice customers on the telephone. I make things. I ship things. I lift heavy things. I edit what Kathie writes and sometimes shoot video or photos that Benjamin needs. My coworkers are my family (literally). At the end of each day I'm nourished and I sleep well.
Looking through our website, I hope you’ll find whatever is necessary to provide the child or adult with a developmental disability in your life with the tools, spirit, and awareness of a future that e.e. cummings described in 1955: To be nobody but yourself in a world which is doing its best, night and day, to make you everybody else means to fight the hardest battle which any human being can fight; and never stop fighting.
Oh, and the building where I went to therapy is still there. After many renovations, it is now a computer repair shop.
“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society.”
The Developmental Disabilities Assistance and Bill of Rights Act
The real problems facing people with disabilities are societal attitudes and actions, that are, in turn, reflected in social policies and practices, that continue to focus on "fixing" people with disabilities through interventions, services, therapies, etc.
Our nation has passed many laws on behalf of people with disabilities over the past 50 or so years (Section 504 of the Rehabilitation Act in 1973, Special Ed law [IDEA] in 1975, and the Americans with Disabilities Act in 1990). All of these, in one way or another, prohibit discrimination based on disability. And while some improvements are apparent, things haven't changed all that much from the Institutional Era!
The majority of adults with developmental disabilities are unemployed and living below the poverty line on government assistance, socially isolated and physically segregated from the mainstream in "special" (segregated) environments. Too many children with disabilities experience similar fates, in self-contained special education classrooms, where, unfortunately, a sub-standard education may be the norm (which results in unemployment as adults). A plethora of other "special" (segregated) activities exist, from recreation to worship and everywhere in between. And for too many, the focus is, as mentioned above, "fixing" people with disabilities. But they're not broken and they don't need to be fixed!
Would it make a positive difference if this was our attitude about all people with disabilities? This design is on a variety of products in our Online Store!
Improvements in laws and policies may be needed, but those can only establish a framework. Real human connections—infused with positive values—are what will make all the difference in the lives of people with disabilities.
Ed Burke, International Consultant, Disability Policy