Disability is Natural-Talking with Kathie Snow
Kathie Snow is a wife, mother, writer, presenter, and owner of BraveHeart Press. Recently, Answers4Families was very privileged to have Kathie answer some questions with her very busy schedule! Kathie's goal is to change perceptions and views of disability issues. In addition to articles and books, Kathie maintains the Disability is Natural web site, which is a wealth of information and articles that further express Kathie's views of creating a society where everyone is valued and respected. Click here to read rave reviews about Kathie's presentations and writing from professionals, parents, and persons with disabilities.
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Q:The name of your website is Disability is Natural. Where did you come up for the name of the website? What does it mean?
A: The phrase comes from the federal Developmental Disabilities Assistance and Bill of Rights Act, originally passed back in the mid-1970s, and it’s been reauthorized many times since then. Part of the Act states:
“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.”
I first heard those words when my now 21-year-old son, Benjamin, was three years old and they hit me like a thunderbolt—causing me to rethink everything! I realized it was as natural for my son to have cerebral palsy as for him to not have it; that there have always been people with disabilities in the world and there always will be; that disability is like gender, ethnicity, etc.—it’s just one of many natural characteristics of being human; and that those 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!
In my opinion, we’ve made a “big deal” out of disability in a negative way that causes harm to people with disabilities—focusing on perceived deficits, problems, etc. and trying to “fix” people—instead of focusing on a person’s strengths, and recognizing that the presence of a disability simply represents natural differences in how a person’s body or brain operates.
Q: What is your educational background? What is the basis of most of your material?
A: I have a couple of Ph.D.s from the School of Hard Knocks! Seriously, I attended community college for a couple of years when I was much younger, but most of my knowledge comes from the wisdom of the true experts: people with disabilities, including my own son. I began learning from adults with disabilities when I participated in the Partners in Policymaking leadership developmental program when my son was three, and I continue to be a “student” in learning from people with disabilities, their families, and people who work in the field. Most of my material comes directly from these personal experiences—my own and the experiences of others. For example, I do presentations all over the country, and receive many Emails from my website, and someone will ask me a question or share an experience and many of these informal conversations are the spark that ignites an article. These articles are then included in my monthly Disability is Natural E-newsletter and/or are used as handouts during my presentations.
Q: What is a typical day like for you?
A: It all depends on whether I’m on the road presenting, or at home. When I’m presenting, a typical day is “road warrior” style: getting to the airport, waiting on flight delays, renting a car and following MapQuest directions to get me to a strange place or taking a taxi, checking into a hotel, checking Email if there’s time, getting ready for the next day’s presentation, sleeping in a strange bed, presenting all the next day and having a ball meeting new people, try to get a good night’s sleep for an early morning flight the next day. Travel is not fun—but presenting, meeting new people, learning from others, sharing laughter and tears with other parents, and more, rejuvenates me, touches me deeply, and keeps me keeping on! When I’m not traveling, I go to bed early, get up early, pull on some old jeans or sweats, don’t put make-up on or fix my hair unless I absolutely have to, answer Emails, write articles, fill orders from our website store, try to come up with new ideas for new products, AND be a wife and mother—cook, clean, wash clothes, go to movies with my family, and all the rest! I have a super hubby and son who do a fantastic job of keeping the home fires burning when I travel, and it’s always good to get home and be a wife and mom! I have a wonderful life and wouldn’t change a thing, except I sometimes wish I could clone myself so I could get more done!
Q: What is your ultimate goal for your work?
A: To help others regain their common sense. Today’s conventional wisdom has resulted in a form of brainwashing in how we think about disability. All the services, programs, etc. haven’t gotten us where we want, but we keep doing it! My hope and my goal is for all children and adults with disabilities to live Real Lives (not “special” lives), included and valued in all areas of our society: school, work, community, etc. For as much progress as it appears we’ve made in the past 50 years, in the form of laws and programs and services, not that much has changed: too many people with disabilities and their families are still invisible, segregated, marginalized, and devalued—they’re not included in ordinary, inclusive activities. They’re stuck in what I call “Disability World”—a world of “special” and services and segregation. We definitely need “systems change,” and many families seem to believe nothing will change until the system changes. Well, if we wait on the system, we’re holding our children and families hostage to the system! We can decide to make different choices: to not become dependent on the system and to, instead, find what we/our children need in the community. And, no, these wouldn’t be “special programs,” but ordinary activities, natural supports, etc., that can meet the needs of our children and families. In our family, we realized years ago that we didn’t want “special stuff”—we wanted “ordinary stuff.” In my view, our goal should be for our children to live the lives they’d lead if they didn’t have disabilities. I’m not talking about “functional skills” like walking, talking, etc., but that our children have the same experiences and relationships as other kids of the same age. And no system can provide that, only we, as parents/families can do that, with help from friends, neighbors, teachers, and others who share our values. Years ago, I asked every audience of parents this question (and I quit asking after a few years, because the answer was always the same)…but I asked, “What’s the biggest issue you’re facing: having a child with a disability or dealing with the system?” Well, you know what the answer was: “Dealing with the system.” So once we recognize that, why don’t we do whatever it takes to get out of the system? Too many parents, in my opinion, continue to want to “fight” and “advocate”—but these efforts seldom get us what we really want and need, and in the process, we’re exhausted, weary, and hopeless. So why do we keep doing it? I’ve found that it’s much easier to network in the Real World (not just Disability World), make connections, look for community opportunities for our son and our family that meet our needs and ensure inclusion, etc…..so that we’re living Real Lives!
Q: What do people commonly ask you when you do presentations?
A: Well, many spend more time telling me I’m not “realistic” than asking questions! But the strategies I recommend are realistic—they’re working for my family, and they work for many others who decide to change their way of thinking. And, ultimately, none of this is really about a person’s disability diagnosis; instead, it’s about our attitudes, and the actions we take based on our attitudes. So it’s all about us, changing our attitudes and the rest will follow. It’s not always easy, but it’s worth doing, because our children’s lives are at stake! But back to your question…many people ask questions that are “disability-specific,” like, “But what about people with [fill-in-the-blank diagnosis]?” They might readily agree that my strategies can work for one disability or another, but not for people with [fill-in-the-blank]. And my response is what I just shared: that it’s not really about the person’s diagnosis, but about our attitudes. This can be really hard for people to embrace, because historically, we’ve looked for “solutions” to “fix” the “problems” of children with disabilities: therapies, interventions, services, programs, etc. But if all these “worked,” why do we still have adults with developmental disabilities??? I try my best to put myself in the position of a person with a developmental disability, and I can’t imagine what it must feel like to have a life in which others are always trying to change me, fix me, make me do things my body or brain can’t do. So, by learning from people with disabilities themselves, I’ve learned to look at disability differently, and to realize that rather than trying to change THEM, we need to change ourselves and how we view disability. Instead of trying to “fix people’s problems,” we need to provide them with the assistive technology, supports, modifications, and accommodations they need so they can lives the lives they want!
Q: What do you find to be the most challenging part of your work?
A: Essentially, what I just described. Many people seem to want a “recipe book” or a “quick fix” to, again, “solve the problems of disability.” I understand this, for I thought this way at one time, before I began learning from people with disabilities and really listening to them. All of this is really about changing our hearts and minds. That means we have to work on ourselves. And it seems that most people have difficulty doing this. In my experience, recognizing that we need to think differently and act differently is frightening to many people; they think that if they realize they need to do things differently, it means what they’ve done in the past was “wrong,” and that’s threatening to many people. They’re heavily invested in their own way of thinking and acting, and they see “changing their minds” as a weakness. But I see it this way: at one time, we didn’t have sewing machines; everything had to be sewn with a needle and thread by hand. Then, once sewing machines were invented, we had a new “tool” that made things better. That does mean that sewing by hand was “wrong”—it was just the “old way” and now we have a “new” way…and there are other examples we could use. The same can be true with our thinking: old ways and new ways. I’m a human, and like others, there are things I wish I could go back and do differently. But that’s not possible. So I’ve learned to embrace this way of thinking (and I’ve learned this from many different sources): “All of us, including me, have done the best we knew to do at any given moment in time. No one gets up in the morning and thinks, ‘I’ll go do my worst today; I’ll do the wrong thing today.’ No—we get up every day and try to do our best with what we know. But our best tomorrow will be better than our best today, because, hopefully, we learn new things and then put them to work.” If we can think this way, then changing our own attitudes and actions can be easier.
Q: What are you most proud of?
A: Wow, this is hard—and I don’t know that I can think of one thing that’s more important than others! I’m very proud of my family, and that we’ve been able to move beyond Disability World and live wonderful lives. Our 21-year-old son, Benjamin, is attending college, has won a national film award, was an active volunteer in the Obama campaign, and lives the life of his dreams—despite the dire predictions about his future from a bevy of professionals throughout his life! The doctor who diagnosed him with cerebral palsy at the age of four months told me to “Take him home and do the best you can…” Later, when he was in elementary school, the school district psychologist told me our local developmental disabilities agency had a waiting list for adult services, so I better get my son on the list at that time, so by the time he was an adult, he’d be near the top of the list! I told this man we had no plans to use adult services when Benj was grown; his jaw dropped and he asked what we would do instead; I said the same thing we’d do for our daughter…that Benj would go to college or vocational school so he could support himself as an adult. He said I wasn’t being “realistic.” One teacher told me our family was “dysfunctional” because of my son’s disability, and told me I should be more realistic, that my son was never going to be a Rhodes scholar (but he is in Phi Theta Kappa, the national honor society for community colleges!). And other “experts” routinely told us to lower our expectations, but we never listened to that nonsense. Benjamin uses a power wheelchair and other assistive technology, and he needs lots of support, but we decided long ago that his disability wouldn’t run his life; his hopes and dreams would.
I’m also very proud of the “Ah-Ha” moments—when people with disabilities, parents of children with disabilities, or professionals attend my presentations, or read one of my articles or my books, and then have an epiphany, realizing they have the power to change. Many thank me profusely, some have tears in their eyes, and all have enthusiasm and passion about what’s possible. I deeply appreciate their kind words, but they give me too much credit. I probably didn’t tell them anything they didn’t already know; I just helped them rediscover their common sense so they could act on it. I am ever so grateful for the opportunities to share these precious moments with others—they provide the sparks that help me keep the fires of passion burning!