2011 Keynote Address
I’d like to begin with the following quote:- “It can only be good if fewer people with “handicaps” are born. Average productivity would increase, fewer accommodations would need to be made, and a great deal of suffering would be avoided.”
This is just one of several comments made on one particular blog site in response to the predicted effects of a new prenatal test for Down syndrome planned to begin sometime in 2012. With the availability of this test, there is speculation that thousands of women a year may opt to terminate pregnancies if their unborn child has Down syndrome. In fact, the Boston’s Children’s Hospital estimates this number may be as high as 90 percent.
Other responses to this issue include the following.
- “A better argument (for earlier prenatal testing) is that a handicapped child will not only suffer from a poor quality of life, but will also lower the quality of life for their parents and any siblings. If little Bobby can’t go to college because their parents had to blow their savings on the special needs of his disabled sibling then the handicap is no longer centered on the single individual with the problem.”
- “On balance it will be a good thing if fewer people are born with defects.”
- “It’s about time. Better living through science. “
These thoughts obviously are very disturbing and I was not expecting to talk about prenatal testing and I don’t plan on getting into the unpleasantness of this conversation. However, it is this very conversation about how we address difference that gets to the heart of my own personal experience and what I wanted to talk about today.
They say it takes a village to raise a child and looking back on my life I realized there were a number of different circumstances that for better or worse helped me develop my own views on what for me makes a strong, safe community.
As I reflect about what it was that made me feel comfortable or uncomfortable in those communities I realized that tolerance and acceptance for difference not only created an atmosphere of safety but a vibrant exciting place to be as well.
However, I also learned that tolerating difference is not easy. The world is full of messages to be a certain way if you want to fit in. TV, magazines, politics, and yes even religion set a standard for what is acceptable. The remarks mentioned earlier illustrate this all too well. In my case I learned at a young age how difficult it is tolerating differences. I also learned that intolerance creates fear which feeds more intolerance. In some instances an intolerance for parts of who we are ourselves.
Without boring you with too many details I’d like to share some of the things that helped shape my view of community. Whether it was my experience as the only farm kid from upstate NY at a CT prep school, or being personally responsible for perpetuating intolerance onto others as a scared new kid in town, or learning on a small dairy farm in central PA that the people you were so frightened of as a child because of their obvious difference would become some of the most important people in your life, or discovering the freedom to be myself in a college community that not only tolerated difference but encouraged it, or finding the courage to face the fears that stood in my way in a community called “Homeplace,” I learned that strong safe communities empower individuals to confront the fears that feed intolerance. The development of this awareness was a long but valuable experience and one I struggle with even today. But perhaps the greatest lesson of tolerance and safety came from the most unexpected place.
When I became a parent of a child with Down syndrome I was scared. I wasn’t afraid of her. I was afraid of what I knew about the world and what it would possibly mean for her. I knew there were people and places in the world that do not tolerate difference and that this could affect her sense of security. To cope with this I began looking for ways to help her fit into the world more easily. We worked with the Winston Prouty Center and the Family Infant Toddler program to enhance her development. We read an endless number of books and articles and did everything we could think of to help her. Some of this was of course well intentioned. I wanted her to have every opportunity for success. Some of this, I have to admit, was the result of my inability to confront the fears I had about my daughter not being accepted or included into her larger community because of her outward and obvious difference. I think there was a part of me didn’t want her to be different.
The hardest thing about having a child with a disability is not what most people might think. It is knowing the degree of self-perpetuating fear and intolerance that exists in the world. Views such as those I discussed at the beginning. When asked is it harder to have a child with Down syndrome, Amy Julia Becker wrote on her blog: ”I suppose the answer is yes. And yet the largest source of stress associated with having Penny in my life has nothing to do with her particular needs. Rather, it comes from knowing that our daughter is entering a world in which people assume they know her abilities (or lack thereof) simply by looking at her face, with its flat features and extra fold of skin around her eyes. The hardest thing about having a child with Down syndrome is knowing that there are people who would compare her to a dog (as one reader did in a comment to my original post) and people who assume she takes more from us than she will ever be able to give or that she is a “cross to bear”. I have the privilege of being the (parent) of a child with Down syndrome and, through her, being introduced to a world of people who have taught me more about what it means to be human than my education and productive life skills ever could. Harder times may come, but I cannot imagine a day when I would regret her presence in my life or in our community.”
After years of learning about confronting my own personal fears and battling with my own insecurities about being different, it was my own child that was able to show me the skills and ability that I’m not sure I will ever measure up to.
Her attitude of I’m different and I belong is inspiring. She is fearlessness in her authenticity. Secure in her body and her abilities. Possessing unconditional acceptance and love for her family and friends, which could be anyone willing enough to spend time with her. She taught me the folly of having to protect her from the world’s expectation of her. Kayli likes being Kayli, is there anything more important. She is 12 years old and possesses qualities I am still attempting to develop. Her inspiration is, the example she sets for acceptance of others as well as herself. She uses what people see as a disability and demonstrates such a strong ability. She has touched not just my life but the lives of others around her in ways I could never imagine. There are people here because of her and I want to thank each and every one of you who are here for her and everyone else.
In the end differences exist in all of us. We all have disabilities of some sort. Some are more noticeable than others. Having a “noticeable” disability may be more frightening and threatening to some but excluding it does not make our community safer or bring us any greater degree of control. What handicaps us is giving into to the fear that people will see us as different and then reject us. It is easy to develop intolerance for parts of ourselves by covering them up and hiding from the things that make us different. In the end it feeds our own intolerance for who we are. The choice we have as a community is whether or not we choose to face our fears and embrace difference or give into fear and perpetuate intolerance and reject difference whether it is obvious or hidden. If we chose the latter then we all lose, because in the end we are all different and have handicaps. Kayli’s inspiration is her acceptance of herself and her desire to share this with the world. As much as you may believe that it takes a village to raise a child sometimes it may take a child to raise a village.
I am very proud of what we as a collective community of family and friends across the world and here in this region have been able to accomplish in dispelling the fear of difference. Legislation has helped protect and supported the rights of many. This is the 3rd annual Buddy Walk here in Brattleboro joining hundreds across the country to help raise awareness. Trail blazers like Katherine, Emma, Brian and others have helped pave the way for Kayli and she and others will do the same.
The progress we have made to promote inclusion and tolerance has been wonderful but there is work to be done. We don’t need to look very far to see the kind of standards that have been set in the media and elsewhere. The evolution of what it means to belong to a community that is safe and strong however is only beginning and you my friends and family members can lead us. We have an obligation to carry forward the lessons we have been given. We have many allies that have supported us in the past and ready to continue that support into the future.
It’s time to raise the bar even higher for ourselves and for our communities. It’s time to step forward and make a difference for everyone. I believe the community in this region has the ability to be an even stronger leader and example of tolerance and inclusion if we are willing to come together and make it happen. Bringing people of all abilities to the front and give them a more prominent place in our schools, in the work place, in our politics, in our media outlets, our churches and community groups.
Think of why you are here today. Everyone here has a story of inspiration to share. It may be a story of courage, exceptional kindness, unconditional acceptance of each other and ourselves, whatever it may be. It’s time for each of us to share the inspiration our friends and family members have given us. To help make this a stronger safer community. One that values difference even more than it does now. You are our inspiration. The leadership of kindness and acceptance of others and ourselves. You have made me a better person and can do the same for others, and bring an end to the idea that we are better off without you and show the world how beautiful and inspiring you can be.
Lead us forward.
Written and delivered by Jim Nicholson.
