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Today, I’m a wife and mother, as well as an author, public speaker, trainer, consultant, and host of this website. And, like others, getting from “there to here” started out as a personal journey that blossomed into professional opportunities.
My interest in disability issues was born in 1987 in Texas, the same year my son, Benjamin, was born prematurely and then diagnosed with cerebral palsy at the tender age of four months. Before that, I had no knowledge of, or experience with, disability issues. I grew up in Texas, with my civil service Dad, stay-at-home Mom, and an older brother and sister. Life was grand! After high school, I enjoyed a stint in a technical school, several jobs, a little college, a marriage and divorce—the usual ups and downs. Then I met Mark, my soul-mate, at work; we married and started a family, and life was grander!
At the time of Benjamin’s diagnosis, I was like most parents in similar situations—initially bewildered and somewhat frightened. And as many other parents do, I eagerly entered the world of services, interventions, and expert opinions—what I now call Disability World.
I was a stay-at-home mom to two-year-old Emily and baby Benjamin. When the doctors recommended early intervention services, along with physical and occupational therapies, I jumped in with both feet. I did more than was recommended, in the mistaken belief that “more is better.” I took Benjamin to therapy, welcomed therapists and early intervention people into our home (where I had turned our living room into a therapy clinic after buying the gargantuan orange ball, the yellow therapy benches, and more), and did all the home programs. If it existed, I would have won—hands-down—the “Therapy Mom of the Year” award. All the professionals in our lives told me what a “good mom” I was.
At first, I felt the relief that comes from the protective arms of early intervention (therapists, service coordinators, etc.). Within a short time, however, early intervention began to feel like “early interference.” The new people in our lives were wonderful and caring, but I didn't like that all the “services” took over our family's life. It seemed that everything we did—from naptime for my little ones to going to the grocery store and more—was impacted by the rigorous schedule of interventions. Our family privacy and autonomy seemed to evaporate; so many professionals were in and out of the house on a regular basis, and I was routinely stressed by this change in our lives.
Before each home visit, I ran around like a chicken with my head cut off; I felt I had to make sure everything was perfect—what would they think if they saw how we really lived? (Parents: does this sound familiar?) I couldn’t answer the door in sweats and two-day-old mascara and hair sticking up all over my head, and with two little kiddos in diapers, the look and smell of the house was . . . well, you know. So before each visit, I made sure that our home, our kids, and my body were spic-and-span. Picture me trying to frantically shove the vacuum cleaner back into the closet as the visitor’s car pulled into the driveway, taking one last anxious look around the house to make sure everything was just right, rushing to get to the front door before the doorbell rang, and then trying to calm my heavy breathing before opening the door and welcoming the visitor into our seemingly picture-perfect home.
Within a year, I began to question the conventional wisdom of Disability World, but I wasn't sure what to do about it. We maintained the level of services, but I began to say “no” to more services, and this caused my status to change from “good mom” to “non-compliant parent” in the eyes of professionals. So be it.
In 1990, when Benjamin was three, I was a participant in Texas Partners in Policymaking, a leadership program for adults with developmental disabilities and parents of children with developmental disabilities. The Partners program featured state-of-the-art training presented by a variety of different instructors. But just as important were the valuable lessons I learned from my classmates, especially the adults with developmental disabilities. The Partners training was life-changing, and it validated my hopes and beliefs that my son and others with disabilities, and their families, could enjoy rich, full, ordinary lives. Our family didn't want a “special” life; we wanted an ordinary life. As a result of the training, I made some immediate changes in our lives, but it took a little longer to incorporate some of the other extraordinary lessons into our lives. More in a moment . . .
Each Partners participant was required to complete a graduation project; I chose to write an article about the importance of using People First Language. Early on, I was troubled by the descriptions used about my son and others with developmental disabilities, and I was not alone. About twenty years before, people with developmental disabilities had “created” People First Language—putting the person before the disability—as part of the Self-Advocacy Movement. They said then (and still do, today), “We are not our disabilities; we are people, first, and we can speak for ourselves.” But at the time I was in Partners, not much had been written on the subject. As a novice in the field, I shared my article with other parents, disability organizations, newspapers, and anyone else I could find. Since then, I've revised the article numerous times, and it’s been used by thousands of individuals and organizations around the world.
With the wisdom gleaned from my Partners experience, I decided I would not send Benjamin to a segregated special ed preschool at age three. He was—like everyone else in our society—born included; why would I allow him to be segregated? We enrolled him in a neighborhood preschool, where he was just “one of the kids.” We never “asked permission” for Benjamin to be included; we “presumed competence” in Benjamin and the preschool staff, and we also “presumed inclusion” and acted in ways to make it a reality. (And the strategies we used are found throughout many of the articles on this site, as well as in my Disability is Natural book.)
In 1991, we moved to Woodland Park, Colorado, a small town in the mountains, which had a wonderfully inclusive elementary school. Emily started first grade there, while Benjamin attended an ordinary neighborhood preschool. A year later, when he started kindergarten, he was in general education classrooms, with a variety of assistive technology, supports, and accommodations—just like all the other students with disabilities in the school. There was no special ed room at this school; all students were included all the time.
Emily and Benjamin both participated in ordinary community activities: Scouts, park and rec T-ball, etc. Again, we didn’t “ask permission;” we just signed our kids up and, when appropriate, as necessary, and at the right time (strategy and timing are everything!), we explained to others about Benjamin’s wheelchair, his needs, etc. It wasn't always easy, nor perfect; but it was always worth doing and it always worked out, one way or another. Benjamin was living a good life; he had one foot in the Real World, but one foot was still in Disability World, with two therapy sessions each week after school.
Now we have to go back for a moment. During my Partners experience three years before, I tried to learn as much as possible from the adults with developmental disabilities who were my classmates. They had “been there, done that,” and I hoped their experiences could help me be a better parent. I asked lots of questions about their early years, but some of what they revealed was very disturbing to me. They shared their personal stories and, sadly, things haven’t changed much, as you can hear similar stories from adults today, almost twenty years later. They said things like, “I wish I could have made my parents happy…my parents always wanted me to walk [or talk or achieve some other functional skill], and my mom took me to therapy all my life, but I was never able to walk. So I think I must be a big disappointment to my parents.” Wow—this was heavy.
But there was more. I learned from them that the message of therapies and interventions to a child is: “You’re not okay the way you are, and we’re going to keep taking you to therapy until we say you’re okay by our standards.” Of course, this is not the message that parents and therapists intend to send, but it’s what many children hear. (And in a variety of articles on this site, you’ll learn more about other good intentions that often result in unintended negative consequences.) Fearfully, I wondered if three-year-old Benjamin could be experiencing these feelings. Finally, these adults said, “I wish my parents could have loved me just the way I am.” Gulp. Ultimately, the message these individuals received from all the “special services” was that they were not okay and they needed to be changed.
These conversations made me extremely uncomfortable. At the time, I was heavily invested in the medical model: therapies and interventions were the solution, that’s what the experts said! What did these people with disabilities really know? At the time, I didn't recognize that people with disabilities are the real experts. If I had listened to them at the time, I would have had to question not only what doctors and therapists and early intervention staff told me, but I would also have to question my own beliefs and actions—and that's really hard. So I didn't do it; it was too threatening at the time. Instead, I buried what they told me. I couldn’t forget their words; they were in my head. But I did a great job of stuffing them down as deeply I could so they wouldn't bother me anymore. And this worked, for awhile . . .
Now back to Benjamin in first grade. Friends, school, Scouts, T-Ball, and other activities—along with therapy after school—filled his days. I was the carpool mom, and weekday mornings and afternoons were filled with the voices of my two children and a passel of others. About a month into first grade, on the way home from school, the kids crowed about what they would do when they got home that day. “My mom is taking me to karate,” one said. Another added, “I’m going to ballet class! Benjamin, what are you going to do?” Benjamin looked over at me from the front passenger seat and asked, “Mommy, what day is it?” When I said, “Tuesday,” he glumly replied, “I have to go to therapy.” When the other kids had been dropped off, Benjamin added, “I don’t want to go to therapy anymore.” Without taking my eyes off the road, I replied, “I know, honey, but you have to go.” That’s it; end of story, right? So I thought.
For the next six weeks or so, Benjamin repeated his mantra every Tuesday and Thursday, and I repeated mine. Each time, he escalated a bit; his voice got louder and more emotional, but I held firm; the professionals said my son needed therapy, and that was that!
But the next time the scene was repeated, there was a difference and “that was that” was no more. Benjamin burst into tears, crying so hard he almost couldn't speak, he was both sad and angry, and he yelled, “I don’t want to go to therapy anymore. I've been going all - my - life.” (I was immediately saddened that any six-year-old child could say he had been doing anything all his life.)
Wailing and weeping, he continued with great emphasis, “I - don’t - want - to - go - to - therapy - anymore! Going to therapy doesn't make me feel like a REGULAR PERSON!” His tears and words and frustration and sadness and anger caused the words of the adults from three years before to rise up from where I had buried them in my heart and mind. He was telling me the same things they had said, but in his own way. At home, school, Scouts, T-ball, and everywhere else, he felt like a “regular person,” but not at therapy. I heard him; I finally heard him. I realized he had been telling me “no” about therapy for years, but I hadn’t listened. Like when he was three, and he began crying when he saw the therapy clinic as we pulled into the parking lot. My response was to pat him on the leg and say, “It's okay, honey, I'll bet they have some new toys for you to play with.” Well, it wasn’t okay. But at the time, I let the words of professionals become so loud and important that I couldn’t hear the pleas of my own child.
After I finally listened to Benjamin, he never went to therapy again. (And he said, “Thank you for listening to me, Mommy.”) We found more natural ways of helping Benjamin do what he wanted to do (instead of trying to force him to do what professionals thought was important). It's not that therapists and other service providers aren't helpful and valuable; they are. We just need their help in different ways. We need them, as consultants, to teach us—parents, teachers, day care providers, and others—how to incorporate beneficial activities throughout a person’s day, in natural environments, and to do so in ways that do not send the “not-okay” message. And that’s what we did.
Thanks to all I had learned from therapists, I knew how to help Benjamin with exercises and activities to enable him to have better posture so he could play on the computer and do other things that he wanted to do. We realized that “playing with Dad in the hot tub” could be just as beneficial as “water therapy with the therapist.” Benjamin got the “exercises” he needed to help his body and his breathing (by going under water and holding his breath), and he was spending great time with Dad at the same time! The activities in karate class were just as beneficial as the “range of motion” exercises done to Benjamin by the therapist—more effective, actually, since Benjamin was more motivated to stretch his arms and do what the karate “sensei” instructed than what a therapist wanted him to do! (And the same can be true for other children and adults with disabilities.)
On that day, our family left Disability World behind once and for all. It was the day we stopped letting Benjamin’s disability run his life; it’s the day we stopped letting his diagnosis be the most important thing about him; it’s the day Benjamin took charge of his life and his destiny. In order for this to happen, I had to recognize Benjamin and others with disabilities as the experts; I had to question conventional wisdom and regain my common sense; and I had to listen to my son with my ears, my mind, and my heart. Today, Benjamin is a handsome, smart, funny young man who recently earned his Bachelor's degree, Magna cum Laude, from Arizona State University (online program). He's now enrolled in an online Master's degree program at the University of Illinois/Springfield. Learn more about Benj on his page.
My Partners experience led not only to a significant change in the trajectory of Benjamin’s life and our family’s destiny, but also to my life. Back in 1991, after I graduated from the Texas Partners program, and we had moved to Colorado, the program coordinator asked me to return to Texas and deliver a presentation to the 1991-1992 Partners class about People First Language and my Partners experience. (You know the definition of an expert: anyone from out of town!) I knew nothing about public speaking, and was wracked with nerves, but felt passionate about the topics, so that made it a little easier. I guess I did okay, for the coordinator recommended me to others, and more invitations to present followed. The rest, as they say, is history, as I "accidentally" became a public speaker, trainer, and consultant; then a book author and creator of products that promote positive ways of thinking about disability; and host of this website.
Our experiences related to Benjamin having cerebral palsy have enriched our lives: the things we’ve seen, the people we’ve met, and the lessons we’ve learned. We know that Benjamin’s diagnosis is not the most important thing about him, but is just one of many characteristics that make the whole person. He loves to read and write, and is a dedicated student; he’s a big ham and enjoys making people laugh; he loves Buster Keaton, Charlie Chaplin, and The Three Stooges; he likes his fish sticks burned to a crisp; he’s a clothes horse (black is his favorite color to wear); and he uses a power wheelchair and other devices to make his life better. In our home, we celebrate the daily joys of a wonderful, ordinary life. (That's what getting out of Disability World can do.)
For over 20 years, I’ve learned so much from the experiences of people with disabilities and their families (the true experts), as well as from many professionals in the field, and I’ll keep on learning. In turn, I’ll continue to share their stories and wisdom through my presentations, articles, books, and other products. It’s long past time for men, women, boys, and girls who happen to have conditions we call “disabilities” to take their rightful places as valued members of our society, included in all areas of life. Together, we can make it happen!
©2009-13 Kathie Snow, www.disabilityisnatural.com