The older my son gets, the less I am interested in fixing him. This has been a gradual dawning over the past 15 years, since he was first diagnosed with Down syndrome. Our family now lives in a bubble that we’ve carefully created around us. We surround ourselves with people who believe in him. We purposely chose his high school where educators believe he can learn and grow. If friends and family are uncomfortable or embarrassed by him they are no longer welcome in our lives. We have lost many people. Our world has shrunk to the size of those who accept my son as he is.
It was not always this way. When my son was younger, I dragged him to many therapies and interventions. I think this is something all families go through, which stems in part from the pressure we feel from the medical system to fix our children. I was determined to have the best child with Down syndrome ever! I also wonder if part of my need to change my son had to do with my own discomfort with his disability. What’s the fine line between helping him reach his full potential and making him ‘normal’ so he will fit into the typically-developing world. This meant trying (and failing) to erase his extra 21st chromosome. If I truly believed that disability is a natural part of the human fabric, why was I trying to change him?
When my son was born, I wanted to change him to be accepted into the world.
Then I wanted to change the world so he would be accepted.
I finally realized that the only thing I could change is myself.
This week I was at a CHILD-BRIGHT Annual Meeting in Montreal. I stepped out of my bubble into the real world of academics, clinicians and researchers. I realized how soft and warm my self-selected bubble is. Not everybody feels that people with disabilities are fine just the way they are.
CHILD-BRIGHT is a collection of projects dedicated to child health research for children and youth with a brain-based disability. Most of the research is conducted within a medical model. I wrote down snippets of the language used by the researchers:
‘Quality of life’ ‘Deficits’ ‘Intervention’ ‘Problems’ ‘Bad Outcomes’ ‘Subjects’ ‘Populations’
I believe in my heart that most researchers are passionate about what they do because they want to help make life easier for our children. I do appreciate their dedication to their work. But I wonder if the dollars would be better directed to creating an inclusive and welcoming world for people with brain-based disabilities instead. What my son really needs is a less-hostile world. He needs people with influence to advocate for disability rights, inclusive education, employment, housing + basic assured income. (Advocacy has traditionally been a family’s responsibility. But we are tired, so terribly tired, and we need help).
I’m not diminishing the importance of research. But I wonder if we can expand the scope of research to include what matters to families and people with disabilities beyond chasing a cure. Maybe researchers could support families to celebrate (and help the world at least accept) our children just the way they are.