An interview with Kathie Snow from Disability is Natural:
Tell me a bit about yourself and your son.
I’m a public speaker, author, and trainer...happened quite by accident about 19 years ago when I became passionate about disability issues after my baby son, Benjamin, was diagnosed with cerebral palsy at the age of 4 months. Today, he’s 22 and a college student! He’ll graduate with his Associate’s degree this summer, then move on to a 4-year school for his Bachelor’s (and maybe more). He’s a dedicated student and was inducted into Phi Theta Kappa, the national honor society for community colleges. I travel somewhere most weeks of the year, presenting to parent groups, at conferences, etc.
What's the most valuable lesson you've learned from raising a son with a disability?
That the “problem” of disability is never the person’s diagnosis, but is always our attitudes and the actions that follow our attitudes. We can and should make disability irrelevant! Yes, my son has a medical diagnosis of cerebral palsy, but it doesn’t define his life—it’s not the most important thing about him. We decided long ago to let his strengths and abilities and hopes and dreams be more important than his diagnosis---the same things people without disabilities routinely do!
How did Disability is Natural come about?
When my son was three, I was involved in a leadership development training program on disability issues, and so heard from many speakers and also went to other conferences during that time. And I heard one speaker quote from the federal Developmental Disabilities Act which states, in part, that “Disability is a natural part of the human experience...” and that hit me like a bolt of lightning! Yes, disability IS a natural part of life....there have always been people with disabilities in the world and always will be. It’s as natural for my son to have CP as it is for him NOT to have it. And many of us who do not presently have a disability WILL have one if we live long enough, through an accident, illness, or the aging process. Disability, like gender, ethnicity, religious faith, etc., is just one of many characteristics of humanity! I began incorporating that message into my presentations back in the 1990s early on in my public speaking career, then when I wrote the first edition of my book in 2001, it became part of the title: Disability is Natural—Revolutionary Common Sense for Raising Successful Children with Disabilities
Have you faced opposition to your stance that disability is natural?
Yes, but not that much. In a few instances, parents have argued that it’s NOT natural for their children to have autism, that it was caused by a vaccine, etc. And once a radio talk show host really blasted me about it. But if people really stop and think, it doesn’t matter “why” a person is born with or acquires a condition we label as a “disability”....what’s more important it what we do with that! Do we want to wallow in pity or anger, or do we want to do whatever it takes to ensure the person lives the life of his or her dreams? The greater opposition comes from some of my positions regarding how we treat children and adults with disabilities. And so much of what I try to share with others are not my “crazy” ideas (I’ve been called many names!!), but they’re the lessons I’ve learned from the real experts: people with disabilities, including my own son. But I believe we’re still too heavily influenced by the “medical model” of disability, which includes trying to change/fix/cure them through therapies, interventions, etc. In the process, we make them feel terrible about themselves....like they’re “not okay” the way they are. Also in the process, children and adults are segregated and isolated in “special” places.....and all this results in the ugly statistics of the estimated and shameful 75 percent unemployment rate of people with disabilities; adults living below the poverty line in congregate living facilities and adult “programs;” along with millions of children with disabilities who are segregated in schools and other “special” places. It doesn’t have to be this way! But it’s up to us, people with disabilities and families, to make different choices that can put people with disabilities on the path to success, interdependence, inclusion, etc.
What can parents do to empower themselves and raise confident children with disabilities?
Parents need to have the same dreams and high expectations they had for their children before the diagnosis was made. Too often, on the D-Day (day of diagnosis), parents dreams evaporate, and many become hopeless. They lower their expectations for their children and some have NO dreams for their kids....and this is such a loss, for the family, but even more a loss for the child! Our children need us to first dream for them, so that the child can dream for himself. We also need to do whatever it takes to ensure our children can “be” whatever age they are. For example, when a child is delayed in walking or talking, etc., we end up treating them like babies, and then others start slapping those “developmental age” labels on them, such as, “He’s 5, but he functions at the level of a 2-year-old.” Well, we need to give our kids the assistive technology, supports, and accommodations so they can “be” a two- or three- or ten-year-old or whatever. If I had to do it over again, my son would have had a power wheelchair when he was two, so he could have “run around the house” like other two-year-olds, so he could learn and explore and do what other twos do. As it was, we didn’t get him a power chair until he was 9 (at the urging of an adult friend who had CP and used a power chair), and it totally changed his life. The same can be true when we provide a child who’s not talking with a communication device, etc. So it’s up to us to do what’s necessary to give our kids the “tools” they need to live the lives they want. And sometimes, this means going against what the “experts” say. They’re OUR kids, and our responsibility, and our kids are counting on us!
What changes would you make in our educational system and the way we teach children with disabilities?
Again, in school, just as at home, our kids need whatever they need to learn and grow. So schools need to do a better job at providing assistive technology, supports, and modifications. Having said that, many schools really fight parents on buying assistive technology devices, and when that occurs, we (parents) need to buy whatever it is and not fight the school for years. All the time we’re fighting with the school, our kids are going without, and their lives are too precious to let that happen. Within the big picture of education, kids with disabilities MUST have a solid academic education, which can only occur in general education classrooms. Kids with disabilities are learners, just like other students, and in order to be successful as adults in the world of work, they need both the academic piece of the general ed classroom, as well as the social piece, so they learn how to get along in the real world. Too many of today’s adults with disabilities were segregated in schools, where they received a substandard education...so no wonder that employment is out of reach for many. But education can change that! There’s just no reason to segregate kids in school or pull them out...why do we make THEM move to a different classroom? Why can’t the special ed teachers and/or others who provide support come to the general ed classroom and make sure kids are learning and are included. My son attended an inclusive elementary school, and all students with disabilities were included in general ed classrooms and they received whatever they needed to learn. It was a wonderful school that had become inclusive in the late 1980s....so we know schools can do this and make it work!
Kathie Snow has written many articles on the Disability is Natural website: Attitude is Everything.
