I never thought much about disabilities beyond feeling sorry for the disabled and their families. I would see a family pushing an obviously handicapped child in a wheelchair and would think to myself, “What a shame to have to live that kind of life.” Or, I would think, “How sad for that family to have to deal with being caregivers for the rest of their lives.” I thought I was being empathetic and sensitive as my mother (certain irony here but that is for another discussion) taught me to be. “Don’t stare,” she would say. “Those people can’t help the way they are. Just be grateful that you are healthy.”
So I grew up and raised my own children with the same set of values. I became a teacher and was sure that I was treating people with disabilities fairly and justly like I had been raised to do. My life had never really been touched by this kind of “horror.” I had “normal” children and grandchildren. My life was fulfilled and I didn’t have to deal with “taking care of someone for the rest of my life.”
Enter the Morguess family. Joey was the first in a long line of Morguesses that would cross the threshold of my first grade classroom. The year he was in my class was the year Finn was born and the family received “the devastating diagnosis” of Down syndrome. I didn’t know Lisa at the time. I just knew she came to pick Joey up from school with a set of twins and their younger sister and an infant secured tightly in a baby sling.
Well, being the baby lover that I am, it did not take long for me to step outside and request a viewing of the package in the sling. I was taken aback. What I saw was a beautiful child but I quickly realized that all was not “normal.” I could tell by his eyes that he probably had Down’s. I just made some generic isn’t he cute comment and moved on, not knowing what else to say. I obviously couldn’t ask if something was “wrong” with the baby because my mother taught me that it was rude to ask. So I kept my mouth shut and silently felt great sadness that this lovely family of “normal” children was now saddled, “for the rest of their lives,” with this disabled child. This was also the year that Michael was diagnosed and treated for stage 3 colon cancer. That story, too, is for another time.
A couple of years later I had Annabelle and Daisy in my class. This is when I became close friends with Lisa. I had been reading her blog over the years, and discovered that she and I had so much in common. We both had rough childhoods with mothers that never should have had children, we were both voracious readers; she invited me to join her book club, and we both adored her children. So now I was on the inside of this family that was so unfortunate to have a handicapped child.
This is what I have learned from having the privilege of being an “insider.” I knew absolutely NOTHING about having a child with a disability. I was embarrassed at how ignorant I was about the subject. I love Lisa’s blog and read it faithfully so I was already learning quite a bit about the real issues involved with raising a child with a disability from all of her blog posts. But the one who really dispelled all of the myths I believed about Down syndrome was Finnian Hendrix Morguess, himself. He is a bright, energetic boy. He is “normal” for him. It is like watching a child develop in slow motion. He meets the milestones but not at the same time as a “typical” child. It is utterly ridiculous to feel sorry for the family. They certainly don’t feel sorry for themselves. Finn is an active, wonderfully adventurous toddler. What is “normal” anyway? Finn is Finn. He is not Down syndrome, he is not a disability, and he definitely is not a burden. He is a son, a brother, a student, and a child who happens to sport an extra chromosome.
As I learned more about the myths of having a family member that is not typical, I began to see that the biggest concern of the family is that others would not see Finn for who he is but instead would see only him as different. Kevin began his assault on the “R” word at the junior high level and I found myself wanting, no needing, to fight this battle as a teacher. Lisa gave me the movie Deedah, which I now show every year in my classroom. Along with the movie, I read the book, Junkyard Wonders, by Patricia Polloco. We have long, long discussions about embracing people’s differences and celebrating every life as necessary and important. The “R” word is a hurtful slur that should never be uttered.
I ended up having the twins for 2 years and now I have Lilah. With any luck, Finn is next!
The point I want to get across to my students is that everyone is different in one way or another. Finn is a person first. All the rest is just what we, as a society, make of it. I love you Morguess family. Thanks for letting me in!
~ Caryl Phillips